View leaving pool - last time
Where I escaped - The Catalina Pool
My perfect traveler
Home sweet Home
Imagination
Monday, April 30, 2012
New Info and Haircuts
I forgot to tell everyone....but I GOT MY HAIRCUT AT A SALON!!!!!!!!! Again, this to me is another huge step that I made some significant progress in Phoenix. The last time I got my haircut was months and months ago and my cousin Paul came to the house and cut it for me. This time, with the help of a driver..aka mom, I made the 30 minute trek to Mequon the day after my flight in from Phoenix, and arrived at Kwof, Paul's salon. I took one precaution, which was I washed my hair before I went to aid in the process. I also realized that the act of having my head leaning backwards in the chair was probably a major factor in the difficulty I would have and feel so out of sorts going to the salon.
I tried to get a iPhone self photo - but please, who can look into a camera and take a self portrait that doesn't look absolutely ridiculous! I did take one by accident that was my shiny locks and the bottom half of my face, but upon further review was concerned it looked like some strange pic you might find that corresponded with a 1-900 number! Here's Sue's latest post that made me think of the connection to my haircut.
www.livewithcfs.blogspot.com
I tried to get a iPhone self photo - but please, who can look into a camera and take a self portrait that doesn't look absolutely ridiculous! I did take one by accident that was my shiny locks and the bottom half of my face, but upon further review was concerned it looked like some strange pic you might find that corresponded with a 1-900 number! Here's Sue's latest post that made me think of the connection to my haircut.
www.livewithcfs.blogspot.com
WEDNESDAY, APRIL 25, 2012
New CFS Brain Study Shows Reduced Activity
My Yahoo Alerts e-mail this morning was filled with articles and postings on a brand-new CFS study just released (but not yet published) by the CDC (believe it or not!). Here's a summary of the study (pretty brief and easy to understand).
This is an interesting one. They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward. Not surprisingly, the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).
Several interesting points stand out here to me. First, the study was conducted by the chief of the CDC's chronic viral diseases branch! This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.
The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.
And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation. I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS. I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy). It's nice to have some biological evidence to back up what we are experiencing.
Just an interesting little tidbit from today's news. I know I haven't been writing much lately, but I've been really exhausted and overwhelmed. We've had house guests since Friday, and I have been working frantically on a major writing project. I hope you are all doing well this week!
This is an interesting one. They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward. Not surprisingly, the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).
Several interesting points stand out here to me. First, the study was conducted by the chief of the CDC's chronic viral diseases branch! This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.
The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.
And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation. I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS. I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy). It's nice to have some biological evidence to back up what we are experiencing.
Just an interesting little tidbit from today's news. I know I haven't been writing much lately, but I've been really exhausted and overwhelmed. We've had house guests since Friday, and I have been working frantically on a major writing project. I hope you are all doing well this week!
Survivor
As someone whom for the past six years has felt like every day I am hanging by a thread to survive - I can not understand those that choose to go on a show like Survivor. There is an element of the show, which to be fair, I have only seen the first five minutes of one show, that I find extremely offensive. I know, I get it - its entertainment value, its pushing oneself past any limits they thought they had, I am not immune to that understanding, however when in the real world there are so many people truly trying to survive - there is that part of me that gets that "ick" factor - not being humble that "surviving" for entertainment value thumbs its nose to those that literally have no water. But again, I always recognize my world view as being skewed because of this struggle I have been dealing with - and it is difficult to separate those feelings everyday with a show that people choose to but their health at risk - and as someone who again knows that often that health is not guaranteed I have a concern for those individuals that perhaps will push their bodies past the point of no return.
I personally love the show Amazing Race, much of that comes from my envy of those that can dive into life so fully and handle the grueling experience that comes with that journey. But it also highlights the struggles of the world and how others around the world embrace what we as American's can not comprehend. It also seems to bring out the best in many people as their hearts are forever changed by witnessing so much of the world - that they may have read about, or seen on tv, but now they have had the unique opportunity to add to the fabric of that world experience.
The point I am trying to get to is today - despite the dental aversion - I felt really good. And more importantly, for a large chunk of time I didn't feel like I was merely surviving. The past few weeks I haven't discussed in depth the virtual "starving" experience that I have had to deal with - without getting into too great of detail regarding the specific reasons, but I have had a great difficulty eating and feeling that I get any nutrients from what I do consume. Besides my choices being severely limited due to the food allergies, think of it as if your intestines are lined with a barrier that prevent your body to take in such nutrients. So I often have this overwhelming feeling of starvation, but when I try to eat get extremely nauseous. Therefore, I eat very small quantities throughout the day - and eating becomes a huge struggle to find what may help to make me feel satiated. For those of you that have been pregnant, perhaps you can on some level relate to this aversion and craving of food. This of course compounds my fatigue. The last few days it hit a peak - I would hold off eating as long as possible because all food was so offensive and then slowly (that's not unusual, since I could win a slow eating contest!) muster the energy to eat and hope it would not make me repulsed. The past few days it has been physically and mentally overwhelming.
Then there was this evening....and all of a sudden, the smell of food wasn't making me sick and I actually had a true appetite. So for dinner I ate like someone who was just released from Survivor Island...and I had the following - buffalo mozzarella, tomatoes, with herb salad and dressing, lots of asparagus, gorgeous salmon and crackers with a havarti cheese spread, and I ate with such vigor and appreciation I find it hard to express with words. Food, it had a taste, a texture and for the first time in weeks I actually felt a bit full in a good way after eating. I have stopped wondering what it may be like tomorrow - but this evening was a bit of heaven!
When my mom, grandma and I were in France, the last night before we were headed home my grandma didn't feel that well. My mom and I were headed out to dinner, and at the last moment my Grandma decided she would buck it up and come. Remember, this was a long trip for her, and she was dealing with bone cancer, and pink eye from Lourdes! She didn't each much dinner, but then for dessert we ordered a chocolate lava cake, and as my grandma finished - she looked up with the biggest smile and said - " I would have died if I missed this! " which of course was ironic because she was dying - but lucky for all of us she was the miracle cancer patient that lived twelve more years! But I can appreciate how she felt about that cake, food has become such a chore and so many wonderful options have been taken away from me, that on a night like tonight when I was able to eat, enjoy and be symptom free from any food sensitivities, its something I never take for granted -
Here's hoping this trend continues...
I personally love the show Amazing Race, much of that comes from my envy of those that can dive into life so fully and handle the grueling experience that comes with that journey. But it also highlights the struggles of the world and how others around the world embrace what we as American's can not comprehend. It also seems to bring out the best in many people as their hearts are forever changed by witnessing so much of the world - that they may have read about, or seen on tv, but now they have had the unique opportunity to add to the fabric of that world experience.
The point I am trying to get to is today - despite the dental aversion - I felt really good. And more importantly, for a large chunk of time I didn't feel like I was merely surviving. The past few weeks I haven't discussed in depth the virtual "starving" experience that I have had to deal with - without getting into too great of detail regarding the specific reasons, but I have had a great difficulty eating and feeling that I get any nutrients from what I do consume. Besides my choices being severely limited due to the food allergies, think of it as if your intestines are lined with a barrier that prevent your body to take in such nutrients. So I often have this overwhelming feeling of starvation, but when I try to eat get extremely nauseous. Therefore, I eat very small quantities throughout the day - and eating becomes a huge struggle to find what may help to make me feel satiated. For those of you that have been pregnant, perhaps you can on some level relate to this aversion and craving of food. This of course compounds my fatigue. The last few days it hit a peak - I would hold off eating as long as possible because all food was so offensive and then slowly (that's not unusual, since I could win a slow eating contest!) muster the energy to eat and hope it would not make me repulsed. The past few days it has been physically and mentally overwhelming.
Then there was this evening....and all of a sudden, the smell of food wasn't making me sick and I actually had a true appetite. So for dinner I ate like someone who was just released from Survivor Island...and I had the following - buffalo mozzarella, tomatoes, with herb salad and dressing, lots of asparagus, gorgeous salmon and crackers with a havarti cheese spread, and I ate with such vigor and appreciation I find it hard to express with words. Food, it had a taste, a texture and for the first time in weeks I actually felt a bit full in a good way after eating. I have stopped wondering what it may be like tomorrow - but this evening was a bit of heaven!
When my mom, grandma and I were in France, the last night before we were headed home my grandma didn't feel that well. My mom and I were headed out to dinner, and at the last moment my Grandma decided she would buck it up and come. Remember, this was a long trip for her, and she was dealing with bone cancer, and pink eye from Lourdes! She didn't each much dinner, but then for dessert we ordered a chocolate lava cake, and as my grandma finished - she looked up with the biggest smile and said - " I would have died if I missed this! " which of course was ironic because she was dying - but lucky for all of us she was the miracle cancer patient that lived twelve more years! But I can appreciate how she felt about that cake, food has become such a chore and so many wonderful options have been taken away from me, that on a night like tonight when I was able to eat, enjoy and be symptom free from any food sensitivities, its something I never take for granted -
Here's hoping this trend continues...
should be...
So I should be at a the dentist right now. I was at the dentist, I white knuckled it there and sat in the parking lot gearing myself up for the not that traumatic cleaning. Then I told myself I was being absolutely ridiculous being nervous to go to the dentist, took a deep breathe, strode confidently to the front steps, opened the door - saw no one at the front desk and before the door could close behind me I was out of there. If I wasn't so irritated at myself I probably would be laughing - okay, so I am laughing a bit at my CIA like operative mission - I don't know what came over me - that weird smell - the 70's looking furniture - or being over stressed from everything else - but today I just couldn't do it.
This isn't a new dentist, and despite every time I enter I want to leave, I have never before pulled the quick exit like today. I didn't make up some phony excuse, when I called, however I did high tail it out of the parking lot in case the hygienist had any idea of coming outside to cajole me inside. It is all so ridiculous, I am 39 years old - and have spent the last three months getting my blood removed and re-entering my body - yet the thought of mouth wide open, the utter loss of control today for some reason just was too much to handle.
This past weekend I have been dealing with the concern that my house is giving me a headache. I have already had a mold guy out here, before we left and he found a tiny bit of mold in our OCD pristine basement, I have had the vents cleaned, and now I called the mold guy again because I feel like something in this house is making me worse. The thing is I love my house, my dad and uncle had it completely gutted and its right behind my sister's house - but there has always been a smell - that only i can smell or others if the house is closed up for extended periods of time that bothers me. So, its been an uncomfortable feeling, I have had all the windows open and turned the heat off - just in case...
Yesterday, I felt like I was losing my mind - overwhelmed by the possibility that something that may not bother anyone else I am hypersensitive to - and all you want to do is feel comfortable in your own home, and right now I do not. I am guessing its more about getting use to a humid climate again coming from the desert - and am crossing my fingers that the headaches I am getting - a symptom that I never have is just an odd coincidence - but we will see. Mr Air Quality guy Pat is coming on Wednesday. And Thursady - take two at the dentist.
This isn't a new dentist, and despite every time I enter I want to leave, I have never before pulled the quick exit like today. I didn't make up some phony excuse, when I called, however I did high tail it out of the parking lot in case the hygienist had any idea of coming outside to cajole me inside. It is all so ridiculous, I am 39 years old - and have spent the last three months getting my blood removed and re-entering my body - yet the thought of mouth wide open, the utter loss of control today for some reason just was too much to handle.
This past weekend I have been dealing with the concern that my house is giving me a headache. I have already had a mold guy out here, before we left and he found a tiny bit of mold in our OCD pristine basement, I have had the vents cleaned, and now I called the mold guy again because I feel like something in this house is making me worse. The thing is I love my house, my dad and uncle had it completely gutted and its right behind my sister's house - but there has always been a smell - that only i can smell or others if the house is closed up for extended periods of time that bothers me. So, its been an uncomfortable feeling, I have had all the windows open and turned the heat off - just in case...
Yesterday, I felt like I was losing my mind - overwhelmed by the possibility that something that may not bother anyone else I am hypersensitive to - and all you want to do is feel comfortable in your own home, and right now I do not. I am guessing its more about getting use to a humid climate again coming from the desert - and am crossing my fingers that the headaches I am getting - a symptom that I never have is just an odd coincidence - but we will see. Mr Air Quality guy Pat is coming on Wednesday. And Thursady - take two at the dentist.
Saturday, April 28, 2012
proud
I have four "draft" posts, for some reason the past week or so I have had a huge writer's block. I start I stop I analyze I get off track...therefore more accurately a writer's storm - where so many things are running through my mind that I am having difficulty putting these thoughts down in a coherent manner. Its been a week, actually, as of right now at midnight, exactly one week since I have returned from Phoenix - and leaving day and arriving night have had there own challenges. I feel out of place - a bit unhinged.
Of course, the red battery low signal is staring me down in the upper right corner, reminding me of how utterly un-organized I am...and since its midnight and I am writing by the light of the computer screen and have absolutely no desire to go find the power cord - I will have to wrap up these swirling muses rather quickly...
So, in my insomnic state, due to the overwhelming fatigue that had me in bed until 2pm, i will try and focus. The good news is I can't sleep because I rested, something that normally wouldn't affect me - the bad news was I watched three back to back episodes of the Guiliana and Bill reality show...and in spite of myself got a bit misty eyed. What struck me was how often her husband said he was proud of her during her struggle with infertility and then breast cancer diagnosis and treatment. I may have mentioned this before, but its bears repeating, he also doesn't dismiss her personal struggle as "not as bad as someone else's" and for someone dealing with chronic health issues it has been my experience, except for my immediate family and a few close friends, that is something I rarely hear - and often in someone's attempts to "make me feel better" i will hear the exact opposite - like at least you don't have...the thing that also struck me was the Bell Shaped curve of her struggles and the orderly pro and con list that the couple use to solve the problem at hand. I won't lie that I felt a bit miffed when I saw all the outpouring of support and cards and emails...but the big C patients got smart - they took action and said - this sucks and here's what you can do to help...
That's the thing with CFS or Chronic Immune Dysfunction Disorder - doctor's can't even decide on the correct name...how the hell do you have a road map if you don't know where you are going? If a consensus has not been reached on the name, causation, treatments...Like so many other's that deal with a chronic condition, you are robbed of the luxury to take a linear course.
I know this illness and its unpaved path hold many roadblocks for both the "patient" and those around them. Speaking for myself I may not always make it easy for others to know what to do to help - here's the thing - you don't really have to do anything - you just have to say - I'm proud of you. My family has this very embarrassing tradition of singing "the proud song" most often at restaurants or in front of friends - when we were "little" and despite all the pleading of stop stop - please do not embarrass me - deep down, acknowledgement is a wonderful gift that feeds us when we feel starved.
So as my warning light is flashing - I'm back on the horse - because I know writing helps - so I will take that prescription from myself and check the box marked "pro".
Of course, the red battery low signal is staring me down in the upper right corner, reminding me of how utterly un-organized I am...and since its midnight and I am writing by the light of the computer screen and have absolutely no desire to go find the power cord - I will have to wrap up these swirling muses rather quickly...
So, in my insomnic state, due to the overwhelming fatigue that had me in bed until 2pm, i will try and focus. The good news is I can't sleep because I rested, something that normally wouldn't affect me - the bad news was I watched three back to back episodes of the Guiliana and Bill reality show...and in spite of myself got a bit misty eyed. What struck me was how often her husband said he was proud of her during her struggle with infertility and then breast cancer diagnosis and treatment. I may have mentioned this before, but its bears repeating, he also doesn't dismiss her personal struggle as "not as bad as someone else's" and for someone dealing with chronic health issues it has been my experience, except for my immediate family and a few close friends, that is something I rarely hear - and often in someone's attempts to "make me feel better" i will hear the exact opposite - like at least you don't have...the thing that also struck me was the Bell Shaped curve of her struggles and the orderly pro and con list that the couple use to solve the problem at hand. I won't lie that I felt a bit miffed when I saw all the outpouring of support and cards and emails...but the big C patients got smart - they took action and said - this sucks and here's what you can do to help...
That's the thing with CFS or Chronic Immune Dysfunction Disorder - doctor's can't even decide on the correct name...how the hell do you have a road map if you don't know where you are going? If a consensus has not been reached on the name, causation, treatments...Like so many other's that deal with a chronic condition, you are robbed of the luxury to take a linear course.
I know this illness and its unpaved path hold many roadblocks for both the "patient" and those around them. Speaking for myself I may not always make it easy for others to know what to do to help - here's the thing - you don't really have to do anything - you just have to say - I'm proud of you. My family has this very embarrassing tradition of singing "the proud song" most often at restaurants or in front of friends - when we were "little" and despite all the pleading of stop stop - please do not embarrass me - deep down, acknowledgement is a wonderful gift that feeds us when we feel starved.
So as my warning light is flashing - I'm back on the horse - because I know writing helps - so I will take that prescription from myself and check the box marked "pro".
Thursday, April 19, 2012
Dreams
A friend told me how Alice in Wonderland concluded, her sister wakes her up with a cup of tea...last night I was lying in bed and i was thinking about that...sometimes this all feels like a dream, and i honestly wonder is someone going to wake me up? I had been lying in bed most of this week with my headsets on just wishing this was a dream - every song that was randomly played kept taking me back to different years when I wasn't plagued with this illness, thus I began a musical trip down memory lane of concerts past...but first I was stuck on one artist I have never seen in concert - Edwin McCain - Solitude. I first heard this song when a friend of the family gave me the best mix tape EVER. My friends and I passed that tape around for years and all of a sudden it went missing - its still missed...
The song is about a childhood friend of Edwin McCain's who's mother left him in a treatment center even after the "doctor said he was well". So he suffered, while she "enjoyed the convenience of his solitude"....it on the surface seems like a strange song for me to relate to - but I connect with it because like Timmy I often feel held against my will by this illness, and I relate to all that he missed because of being locked up.. one of my favorite lines is..."I didn't ask for this solitude...""I put all that behind me - just tell me - what was it like to go to your prom..." I can appreciate when he talks to his friend, he craves the ordinary, the banal events that were taken away from him. I often crave such information, fill me in on what I have missed. There is no denying, shades of solitude is a shared human experience, brought on by a spectrum of circumstances, but the end note is the same. And fighting out of it can be what defines the experience.
As the country mourned Dick Clark today, it was clear his legacy was more than music, it was what music means, what it does, how it unites and how it heals...so here is a brief re-cap of my iPod journey...
Keb Mo / Just Like You..first saw him at A la Carte at the Zoo, a crowd no bigger than you would expect at a high school musical. The second time my cousin, and two dear friends surprised me for my birthday with tickets where he was playing at Ravinia in Chicago. I even waited in line and he signed my two CD covers which I had framed. I still remember his patience while the couple in front of me told him play by play their entire engagement story with drum role please concluded with a bended knee and you guessed it..Keb Mo CD playing..
BoDeans - Good Things...The Riverside Theater, the first concert I took my little sister to, and the T-shirt she agonized over - BoDeans again - this just recently when she was pregnant - one of the last concerts before Sammy left - Sammy who I met one night out at a bar in my twenties - saying, "you look so familiar" - maybe because he was Sammy of the BoDeans...
Hootie and the Blowfish / Hold My Hand - saw them at a Labor Day festival in the park by the lake - Hootie's luggage was lost so he was wearing his golfing outfit! I remember my cousin Tom calling and saying, hey this band that is suppose to be kind of big soon is playing a free concert at the lakefront...
Dave Matthews Band / Crash Into Me with Jars of Clay/ Flood -Majestic Theater, went on a whim when my close friend's sister called and had an extra ticket. I remember eating a grilled cheese sandwich before I left, I wore jeans and a black T-shirt and my hair in a pony tail. I met someone had French Toast at MA Fischer's afterwards....Widespread Panic/Meeting of the Waters - rode our bikes, David Wilcox / Missing You , Blues Traveler /But Anyway - the Rave, Marc Cohn/ True Companion and Willy Porter / Watercolor Sunrise too may times to count - at BBC at Shank Hall at BBC again where my heart was broken wide open, and was begged for another chance and then beat broken and bruised for many years after. "every time I think of you i always still catch my breathe...storm that's raging...makes me smile...heart that was breaking...message in the wire...hard to understand...battles of the spirit left us stranded...brighter days...take this cup of empty hope...just enough of someday soon...run a different path...and its all fine....it's your kindness i love best." love is forgiveness.
R.E.M - / Man on the Moon - one of the first concerts I ever went to with a group of my high school friends, at Alpine Valley - huge deal that my parents let me, frisbee and food and being ridiculous.""the day is long - and the night the night is yours alone and your sure you've had enough..of this life...hang on...""don't let yourself go...everybody cries...and everybody hurts...sometimes...""sometimes everything is wrong..."..."hold on...hold on...hold on..." those friends every day whether they know it or not have a lifetime of memories that bring me comfort.
Grateful Dead/ Sting - The concert was on my 21st birthday, all my friends wanted to go so they "surprised" me - I was living in Madison that summer - and the trip from Madtown to Soldier Field where I knew I would enter a sea of stoned euphoria was about the last thing on earth I would have wanted to do....then of course the Thunderstorm that hit so we were all forced inside to the hallways of Soldier Field - even better - crammed like wet sardines with totally stoned euphoric people waiting out the storm- not wanting to crash at the boyfriend of our friend's sister's apartment meant me - probably the only person besides a recovering addict that was stone sober at a Grateful Dead concert to drive with Jodi and Vanessa - sorry my memory is faded while the others stayed the night back to Madison around 2am...funny in hindsight - not so much at the time! But thanks to the Ladies I can say I saw the Dead!
And so many more..TIna Turner - when I was about 12 with the parents! Summerfest too many great memories to count...John Cougar prior to Cougar Mellancampn /I was born in a small town...Rod Stewart - because Steph had to go!, BoDeans again and again - Violent Femmes/ Why Can't I get just one kiss..., Sarah McLlachlan - when you could listen to her without being overwhelmed with tears for the ASPCA..Natalie Merchant..."these are the days..to remember..."
At the end of my dreams of concerts past, no one woke me up with a cup of tea to gently tell me this has all been a dream...but this marathon of sorts, my own personal Iron Man of health quest is concluding for the time being - I know I am leaving better than I came -and as Kelly Clarkson belts... "think you got the best of me - think you left me broken down maybe you don't know me - because you are dead wrong"..."what doesn't kill you makes you stronger, stand a little taller, doesn't mean I am lonely when I am alone...what doesn't kill you makes a fighter..." well CFS, ME, Immune Dysfunction Disorder, etc etc etc....you will not break me - you will not get the best of me...and I will fight like hell to get out of the grips of your Solitude.
The song is about a childhood friend of Edwin McCain's who's mother left him in a treatment center even after the "doctor said he was well". So he suffered, while she "enjoyed the convenience of his solitude"....it on the surface seems like a strange song for me to relate to - but I connect with it because like Timmy I often feel held against my will by this illness, and I relate to all that he missed because of being locked up.. one of my favorite lines is..."I didn't ask for this solitude...""I put all that behind me - just tell me - what was it like to go to your prom..." I can appreciate when he talks to his friend, he craves the ordinary, the banal events that were taken away from him. I often crave such information, fill me in on what I have missed. There is no denying, shades of solitude is a shared human experience, brought on by a spectrum of circumstances, but the end note is the same. And fighting out of it can be what defines the experience.
As the country mourned Dick Clark today, it was clear his legacy was more than music, it was what music means, what it does, how it unites and how it heals...so here is a brief re-cap of my iPod journey...
Keb Mo / Just Like You..first saw him at A la Carte at the Zoo, a crowd no bigger than you would expect at a high school musical. The second time my cousin, and two dear friends surprised me for my birthday with tickets where he was playing at Ravinia in Chicago. I even waited in line and he signed my two CD covers which I had framed. I still remember his patience while the couple in front of me told him play by play their entire engagement story with drum role please concluded with a bended knee and you guessed it..Keb Mo CD playing..
BoDeans - Good Things...The Riverside Theater, the first concert I took my little sister to, and the T-shirt she agonized over - BoDeans again - this just recently when she was pregnant - one of the last concerts before Sammy left - Sammy who I met one night out at a bar in my twenties - saying, "you look so familiar" - maybe because he was Sammy of the BoDeans...
Hootie and the Blowfish / Hold My Hand - saw them at a Labor Day festival in the park by the lake - Hootie's luggage was lost so he was wearing his golfing outfit! I remember my cousin Tom calling and saying, hey this band that is suppose to be kind of big soon is playing a free concert at the lakefront...
Dave Matthews Band / Crash Into Me with Jars of Clay/ Flood -Majestic Theater, went on a whim when my close friend's sister called and had an extra ticket. I remember eating a grilled cheese sandwich before I left, I wore jeans and a black T-shirt and my hair in a pony tail. I met someone had French Toast at MA Fischer's afterwards....Widespread Panic/Meeting of the Waters - rode our bikes, David Wilcox / Missing You , Blues Traveler /But Anyway - the Rave, Marc Cohn/ True Companion and Willy Porter / Watercolor Sunrise too may times to count - at BBC at Shank Hall at BBC again where my heart was broken wide open, and was begged for another chance and then beat broken and bruised for many years after. "every time I think of you i always still catch my breathe...storm that's raging...makes me smile...heart that was breaking...message in the wire...hard to understand...battles of the spirit left us stranded...brighter days...take this cup of empty hope...just enough of someday soon...run a different path...and its all fine....it's your kindness i love best." love is forgiveness.
R.E.M - / Man on the Moon - one of the first concerts I ever went to with a group of my high school friends, at Alpine Valley - huge deal that my parents let me, frisbee and food and being ridiculous.""the day is long - and the night the night is yours alone and your sure you've had enough..of this life...hang on...""don't let yourself go...everybody cries...and everybody hurts...sometimes...""sometimes everything is wrong..."..."hold on...hold on...hold on..." those friends every day whether they know it or not have a lifetime of memories that bring me comfort.
Grateful Dead/ Sting - The concert was on my 21st birthday, all my friends wanted to go so they "surprised" me - I was living in Madison that summer - and the trip from Madtown to Soldier Field where I knew I would enter a sea of stoned euphoria was about the last thing on earth I would have wanted to do....then of course the Thunderstorm that hit so we were all forced inside to the hallways of Soldier Field - even better - crammed like wet sardines with totally stoned euphoric people waiting out the storm- not wanting to crash at the boyfriend of our friend's sister's apartment meant me - probably the only person besides a recovering addict that was stone sober at a Grateful Dead concert to drive with Jodi and Vanessa - sorry my memory is faded while the others stayed the night back to Madison around 2am...funny in hindsight - not so much at the time! But thanks to the Ladies I can say I saw the Dead!
And so many more..TIna Turner - when I was about 12 with the parents! Summerfest too many great memories to count...John Cougar prior to Cougar Mellancampn /I was born in a small town...Rod Stewart - because Steph had to go!, BoDeans again and again - Violent Femmes/ Why Can't I get just one kiss..., Sarah McLlachlan - when you could listen to her without being overwhelmed with tears for the ASPCA..Natalie Merchant..."these are the days..to remember..."
At the end of my dreams of concerts past, no one woke me up with a cup of tea to gently tell me this has all been a dream...but this marathon of sorts, my own personal Iron Man of health quest is concluding for the time being - I know I am leaving better than I came -and as Kelly Clarkson belts... "think you got the best of me - think you left me broken down maybe you don't know me - because you are dead wrong"..."what doesn't kill you makes you stronger, stand a little taller, doesn't mean I am lonely when I am alone...what doesn't kill you makes a fighter..." well CFS, ME, Immune Dysfunction Disorder, etc etc etc....you will not break me - you will not get the best of me...and I will fight like hell to get out of the grips of your Solitude.
Tim he was a good friend
Yea was a brother of mine
We were imaginary comic book superheroes
Kids wasting time
We were prisoners of our youth
We were growing up strong
'Til the day he was taken away
For something he did wrong
Tim came 'round just the other day
And boy he had some stories to tell
His mama kept him locked up in a rehab
Although the doctors said he was well
He said yeah I been through the anger
And the hatred towards my mom
And I put all that behind me
Just tell me what was it like to go to your prom
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Well growing up these days just ain't easy
And the kids they're doing the best that they can
So mama you better think twice
Before you lock your kid up and throw away the key
'Cause soon your little boy is gonna be a man
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Tim left town yesterday
He left me with these words
He said yeah I know this life's got a lot to give
But my childhood is gone
And I'm not afraid of dying
I'm gonna grab the world by the horns and learn how to live
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Yea was a brother of mine
We were imaginary comic book superheroes
Kids wasting time
We were prisoners of our youth
We were growing up strong
'Til the day he was taken away
For something he did wrong
Tim came 'round just the other day
And boy he had some stories to tell
His mama kept him locked up in a rehab
Although the doctors said he was well
He said yeah I been through the anger
And the hatred towards my mom
And I put all that behind me
Just tell me what was it like to go to your prom
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Well growing up these days just ain't easy
And the kids they're doing the best that they can
So mama you better think twice
Before you lock your kid up and throw away the key
'Cause soon your little boy is gonna be a man
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Tim left town yesterday
He left me with these words
He said yeah I know this life's got a lot to give
But my childhood is gone
And I'm not afraid of dying
I'm gonna grab the world by the horns and learn how to live
He said thank you mom for fixing
My clouded broken mind
But excuse me if I seem a little rude
While I was missing my childhood, my brother and my prime
You enjoyed the convenience of my solitude
Monday, April 16, 2012
Opposite Day
Like Alice looking through the looking glass most of this illness seems like a cruel homage to the topsy turvy. Fatigue unrelieved by rest. Exercise making you worse. In my case healthy foods making me sick. Immune system shutting down for viruses, bacteria and fungi and over reacting to the environment you live in. Smart people with cloudy minds. Thyroid over-reacting with Thyroid stimulating hormone not responding. Opposite day - I hate opposite day. Its hard to function day by day living in opposite land - everything distorted and confused.
Opposite day effects all of us, the argument with a co-worker that you just can't see their point - A basketball game where every call goes the other way, every rimmed shot leaves the basket. The beautiful queen with a heart of stone. Nothing is as it seems and my opposite day has seemed to turn into my opposite world.
You start questioning up from down and left from right. The sane from the insane. I recently read an article that made reference to the fact that chronic fatigue funding was cut off in the early 90's by the NIH because it was deemed a psychological illness. As someone who was described an anti-depressant to gain weight when I was trying to hover above 100lbs - as someone who was point blank asked by an endocrinologist if I had an eating disorder - as someone who went to a doctor who said because I had a few good days I couldn't be diagnosed with chronic fatigue, despite it being over 5 years of dealing with crazy health issues - as a patient who stopped being patient - who wouldn't start losing trust and losing faith in those we were suppose to trust. If just one of those many many doctors I had consulted in the early days just said - "I don't know" rather than "you are mistaken" perhaps on the days when I can barely think straight, find it difficult to brush my hair, I wouldn't constantly have to remind myself that this is real.
Some people may think that I distrust all MD's because I see an NMD for my treatments, and don't be fooled because I don't trust most NMD's either - CFS is a complex multi-dimensional illness and if you find the wrong doctor in the traditional or "complementary" field you can fall down the rabbit hole.
I haven't read Alice in Wonderland in years, so I can't remember how she found her way out -
Opposite day effects all of us, the argument with a co-worker that you just can't see their point - A basketball game where every call goes the other way, every rimmed shot leaves the basket. The beautiful queen with a heart of stone. Nothing is as it seems and my opposite day has seemed to turn into my opposite world.
You start questioning up from down and left from right. The sane from the insane. I recently read an article that made reference to the fact that chronic fatigue funding was cut off in the early 90's by the NIH because it was deemed a psychological illness. As someone who was described an anti-depressant to gain weight when I was trying to hover above 100lbs - as someone who was point blank asked by an endocrinologist if I had an eating disorder - as someone who went to a doctor who said because I had a few good days I couldn't be diagnosed with chronic fatigue, despite it being over 5 years of dealing with crazy health issues - as a patient who stopped being patient - who wouldn't start losing trust and losing faith in those we were suppose to trust. If just one of those many many doctors I had consulted in the early days just said - "I don't know" rather than "you are mistaken" perhaps on the days when I can barely think straight, find it difficult to brush my hair, I wouldn't constantly have to remind myself that this is real.
Some people may think that I distrust all MD's because I see an NMD for my treatments, and don't be fooled because I don't trust most NMD's either - CFS is a complex multi-dimensional illness and if you find the wrong doctor in the traditional or "complementary" field you can fall down the rabbit hole.
I haven't read Alice in Wonderland in years, so I can't remember how she found her way out -
Friday, April 13, 2012
Freedom
I MADE IT TO THE POOL!!!!!!!!!!!!!!!!!!!!! When I am there I think, how can I not be here every day, my love for this pool, being surrounded by vacationers, and the calm of the Biltmore grounds, I realize the only reason I wouldn't be there is if I was too sick to make it...ahh that again.
But today I made it and blissfully swam a few laps and soaked in the cool April day. The water really helped the ache the Phlebitis has caused in both arms, and hoping that has a bit of a lasting effect. I may be sore in a bit, or exhausted later, but the last hour was a taste of possible freedom to come!
But today I made it and blissfully swam a few laps and soaked in the cool April day. The water really helped the ache the Phlebitis has caused in both arms, and hoping that has a bit of a lasting effect. I may be sore in a bit, or exhausted later, but the last hour was a taste of possible freedom to come!
Thursday, April 12, 2012
A Room with a View
No blood treatment today, not strong enough - etc. I had a hydrotherapy and then colorpuncture treatment - which I will someday explain. Got back to the house and was physically beat. I hurt everywhere and after dinner went straight to my bedroom here in Phoenix. As usual, my first thought was, damn I love my sheets. They're not Frette but they are sure close and I am so grateful that my mom brought them. The second thing I thought was - wow - I am ready to go home, but I will sure miss this view. While I have a beautiful comfortable home back in tree lined Elm Grove - I do not have this western view. If I was here in the summer, it would be a punishing heat - but January til April it has been heaven on earth. And while I lie in bed, Sophie at feet I feel so lucky to take in this site....
This was a few nights ago....
And my pretty flowers...
I have four appointments left before I head back home, and the last few days I have been anxious to "get it all in" and take advantage of being here. But today, as I left, I told my doctor I have realized that whatever I have done or completed - it is enough. She had earlier told me how proud she was of me, that I couldn't have tried harder, stuck it out tougher and we have made significant progress - forest through the trees - you sometimes need someone to see it for you, and eventually you may believe.
And when you don't believe yourself, let the burden of faith and hope and love be carried by someone else.
What If...
I wrote a poem in grade school titled what if...probably should have been a red flag. When others were writing about ponies and rainbows; I was pondering the what ifs the world contained. I also wrote a "will" of sorts and gave it to my sister, telling her (nice one Heather, she was five years younger) that if I died I did not want to wear some stuffy suit or dress for eternity - I wanted her to make sure I wore my favorite light pink satin two piece pajamas. I have battled that what if static in my brain as long as I can remember.
In the book HSP - Highly Sensitive People, it explains this group of people that I seem to fall into and the benefits and strengths this highly sensitive nature can bring. But unless channeled in an appropriate manner it can be a constant struggle to fend off its destructiveness.
I had to work hard the last few days to push the what ifs aside, mainly because the last two blood treatments left me both physically and mentally bruised. My one vein most likely has mild Phlebitis and my arms are both sore to the touch. I don't mind the minor pain, and thank goodness I currently am carrying some extra pounds otherwise I might be confused with a Heroin addict. What I do mind is the spinning wheel that my mind has become going through the what if scenarios this new symptom has brought with it - What if I have a clot, what if I can't get any more treatments, what if I shouldn't have done the last treatment, what if I get a more serious blood infection, what if I leave Phoenix before the arc of calmness has come back to reside, the never ending tributaries my mind can partake in are endless and exhausting.
My physician called me last night and suggested I come to the office later in the day so I could get myself better hydrated prior to my appointment. Its been a welcome advent of time not to be rushing around to eat rest eat leave so I took the opportunity this cool day has brought and Sophie and I went out for a short walk. FIFTEEN MINUTES i repeat FIFTEEN MINUTES i was able to walk without my heart pounding, legs aching, instead I had that feeling as my body as if leaving a cocoon was craving the movement it so often is denied.
In the book HSP - Highly Sensitive People, it explains this group of people that I seem to fall into and the benefits and strengths this highly sensitive nature can bring. But unless channeled in an appropriate manner it can be a constant struggle to fend off its destructiveness.
I had to work hard the last few days to push the what ifs aside, mainly because the last two blood treatments left me both physically and mentally bruised. My one vein most likely has mild Phlebitis and my arms are both sore to the touch. I don't mind the minor pain, and thank goodness I currently am carrying some extra pounds otherwise I might be confused with a Heroin addict. What I do mind is the spinning wheel that my mind has become going through the what if scenarios this new symptom has brought with it - What if I have a clot, what if I can't get any more treatments, what if I shouldn't have done the last treatment, what if I get a more serious blood infection, what if I leave Phoenix before the arc of calmness has come back to reside, the never ending tributaries my mind can partake in are endless and exhausting.
My physician called me last night and suggested I come to the office later in the day so I could get myself better hydrated prior to my appointment. Its been a welcome advent of time not to be rushing around to eat rest eat leave so I took the opportunity this cool day has brought and Sophie and I went out for a short walk. FIFTEEN MINUTES i repeat FIFTEEN MINUTES i was able to walk without my heart pounding, legs aching, instead I had that feeling as my body as if leaving a cocoon was craving the movement it so often is denied.
Wednesday, April 11, 2012
Chronic
The forest is deep, the trees are tall, the sky can not be seen.
East, West, North or South, which direction will i be free.
Neither path has been paved, no direction signs to follow.
Ruby shoes nor crystal balls contain the answers, must i beg and borrow
We expect those sick to be positive and hopeful when the rest are not
Wear fancy colored ribbons and partake in long walks
All to aid and abet the spirits that are robbed
I am tired and spent, been poked and prodded
Is anyone even out there - to hold up the downtrodden
The sun is setting and I am blessed with the view
This moment will pass and I no longer will be blue
I must stop now before I make my mom sad
Don't worry its just a poem and sometimes you just need to feel bad
East, West, North or South, which direction will i be free.
Neither path has been paved, no direction signs to follow.
Ruby shoes nor crystal balls contain the answers, must i beg and borrow
We expect those sick to be positive and hopeful when the rest are not
Wear fancy colored ribbons and partake in long walks
All to aid and abet the spirits that are robbed
I am tired and spent, been poked and prodded
Is anyone even out there - to hold up the downtrodden
The sun is setting and I am blessed with the view
This moment will pass and I no longer will be blue
I must stop now before I make my mom sad
Don't worry its just a poem and sometimes you just need to feel bad
Friday, April 6, 2012
Identity Theft
Yesterday I broke down - ugly tears - in my doctor's office. It happens, and I really didn't even know why at the time...I was just so overwhelmed and the fact that my exodus from Phoenix is rapidly approaching put me over the edge. But while my head was buried in my hands, my back violently moving up and down as I tried not to hyperventilate my doctor patiently waiting, and asking what I was feeling behind the obvious - and that's when it became more clear - in the past I have been focused on what I have missed out on over the last few years. But in that moment it came into focus, the subtle shift was this illness has hijacked my identity - an identity i was proud of - an identity that i fear is forever out of reach.
I recently removed a post briefly describing the loneliness this illness has brought with it - every time I realized that was out in cyber-space it made me cringe - not that it wasn't the truth, but it seemed to not accurately describe what I was feeling - and after the breakdown in the office - that evening I realized the aloneness stemmed from this identity theft. This illness effects you physically but it takes a mental toll. Your brain is often foggy, its hard to concentrate, so I often no longer feel present even when I am interacting with others. The holiday's and special occasions are the worst, and they used to be my greatest joy. Give me a wedding any day - I loved the socializing, the dancing, the fun. Now, all of those joyous events are events to manage, to use all my energy to act as if I feel fine when I am often struggling to stay on my feet for extended periods of time. I will forever be grateful that this illness did not take its massive hold in my twenties - because I loved my twenties and all the celebratory events that it contained. When I first moved to Phoenix, shortly after I arrived my good friends were getting married in Michigan. I flew back to Milwaukee, the next morning drove solo the six hours to the other side of Lake Michigan. The car ride filled a McDonald's stop (a food I haven't touched in years), cell phone calls home touching base on my progress and the same Van Morrison CD on repeat. I got to the hotel an hour before the wedding, got myself together and full of energy headed off and laughed, drank and danced all evening long- unlike Cinderella the clock never struck midnight and took it all away. That event seems like a mirage, and most events now feel like the Fairy Godmother is lurking over me, reminding me that the clock will strike at any moment in time and with a wave of that wand she has the power to strike and poof the joy is gone.
Without presenting my CV, let's just say, my life before this illness, was bursting with commitments and obligations that I loved. I loved feeling useful, being helpful, being dependable, being present. In my mind I am none of those things anymore and it honestly breaks my heart and chips away at my soul each and every day. I didn't do these things for any reward, it was my natural state, it was how I found joy. And as family and friends have entered their 4th decade their lives are full - full of their children's activities, new friends, careers that bring with it fulfillment and another social circle, my life seems to be closing in on me - and its a loneliness, disappointment, and void that is hard to describe.
I have so many blessings, those blessings often become a cruel irony, the perpetual carrot on the string that the horse will never chew. I would be looking forward to taking my niece to French classes on the East side - I would be traveling - I would be working - I would have seen my good friend's new home - I would have traveled to Denver to visit numerous friends that have relocated there - I would be going out to dinner - I would perhaps be planning another trip to France to celebrate my 40th birthday - the list goes on and on and on....but the most important thing is I would have the freedom to help my friends and family the way I used to. I would host the Holidays rather than the effort it requires now to just show up. I would feel like myself, more importantly I would be myself.
This illness has come to define me, and today as my hands sweated, the first vein on my left arm infiltrated as the "clean" blood was re-entering my body, not enough time to move chairs, so I was doing a yoga twist to give my right arm, I tried not to cry - I really did - took deep breathes - told myself to buck up and stop being a baby - and this whole thing seems like a dream. When the treatment finished I was "brave" and looked at the remnants of my blood that remained in the glass "jar" (okay i can't think of the term) but anyways, the closed container that housed the 1/25 th of my blood prior to going through the glass slide that houses the UV filter and what was left was as I said, "disgusting". These black globs of debris covered the inside of the container - the debris of bacteria and viruses - the result of die off. If I hadn't seen my blood go through this process so many times I wouldn't appreciate the distinction between clean and dirty blood. Ahh a visual picture of my insides that appropriately matched how I felt.
I haven't felt very strong, brave, resilient the past week - but this treatment forced me to see the reality of what my body is dealing with, and suddenly I didn't feel like I needed to convince myself that I am sick - I try and forget - I try and pretend - but reality has come crashing down again - and I am doing my best for the day I wake up and the first thought in my bruised feeling body isn't - "how am i going to make it through this day."
My doctor, the kind soul she is, reminds me constantly this has been a brutal visit - every day you are working - your body is fighting and that is the good sign - you are responding rather than existing in the state of stasis. I just want my identity back - my 40th birthday is one month and approximately 10 days away - and there will be no greater gift than this invisible thief apprehended and my identity restored. May anyone out there suffering from a chronic illness find peace.
I recently removed a post briefly describing the loneliness this illness has brought with it - every time I realized that was out in cyber-space it made me cringe - not that it wasn't the truth, but it seemed to not accurately describe what I was feeling - and after the breakdown in the office - that evening I realized the aloneness stemmed from this identity theft. This illness effects you physically but it takes a mental toll. Your brain is often foggy, its hard to concentrate, so I often no longer feel present even when I am interacting with others. The holiday's and special occasions are the worst, and they used to be my greatest joy. Give me a wedding any day - I loved the socializing, the dancing, the fun. Now, all of those joyous events are events to manage, to use all my energy to act as if I feel fine when I am often struggling to stay on my feet for extended periods of time. I will forever be grateful that this illness did not take its massive hold in my twenties - because I loved my twenties and all the celebratory events that it contained. When I first moved to Phoenix, shortly after I arrived my good friends were getting married in Michigan. I flew back to Milwaukee, the next morning drove solo the six hours to the other side of Lake Michigan. The car ride filled a McDonald's stop (a food I haven't touched in years), cell phone calls home touching base on my progress and the same Van Morrison CD on repeat. I got to the hotel an hour before the wedding, got myself together and full of energy headed off and laughed, drank and danced all evening long- unlike Cinderella the clock never struck midnight and took it all away. That event seems like a mirage, and most events now feel like the Fairy Godmother is lurking over me, reminding me that the clock will strike at any moment in time and with a wave of that wand she has the power to strike and poof the joy is gone.
Without presenting my CV, let's just say, my life before this illness, was bursting with commitments and obligations that I loved. I loved feeling useful, being helpful, being dependable, being present. In my mind I am none of those things anymore and it honestly breaks my heart and chips away at my soul each and every day. I didn't do these things for any reward, it was my natural state, it was how I found joy. And as family and friends have entered their 4th decade their lives are full - full of their children's activities, new friends, careers that bring with it fulfillment and another social circle, my life seems to be closing in on me - and its a loneliness, disappointment, and void that is hard to describe.
I have so many blessings, those blessings often become a cruel irony, the perpetual carrot on the string that the horse will never chew. I would be looking forward to taking my niece to French classes on the East side - I would be traveling - I would be working - I would have seen my good friend's new home - I would have traveled to Denver to visit numerous friends that have relocated there - I would be going out to dinner - I would perhaps be planning another trip to France to celebrate my 40th birthday - the list goes on and on and on....but the most important thing is I would have the freedom to help my friends and family the way I used to. I would host the Holidays rather than the effort it requires now to just show up. I would feel like myself, more importantly I would be myself.
This illness has come to define me, and today as my hands sweated, the first vein on my left arm infiltrated as the "clean" blood was re-entering my body, not enough time to move chairs, so I was doing a yoga twist to give my right arm, I tried not to cry - I really did - took deep breathes - told myself to buck up and stop being a baby - and this whole thing seems like a dream. When the treatment finished I was "brave" and looked at the remnants of my blood that remained in the glass "jar" (okay i can't think of the term) but anyways, the closed container that housed the 1/25 th of my blood prior to going through the glass slide that houses the UV filter and what was left was as I said, "disgusting". These black globs of debris covered the inside of the container - the debris of bacteria and viruses - the result of die off. If I hadn't seen my blood go through this process so many times I wouldn't appreciate the distinction between clean and dirty blood. Ahh a visual picture of my insides that appropriately matched how I felt.
I haven't felt very strong, brave, resilient the past week - but this treatment forced me to see the reality of what my body is dealing with, and suddenly I didn't feel like I needed to convince myself that I am sick - I try and forget - I try and pretend - but reality has come crashing down again - and I am doing my best for the day I wake up and the first thought in my bruised feeling body isn't - "how am i going to make it through this day."
My doctor, the kind soul she is, reminds me constantly this has been a brutal visit - every day you are working - your body is fighting and that is the good sign - you are responding rather than existing in the state of stasis. I just want my identity back - my 40th birthday is one month and approximately 10 days away - and there will be no greater gift than this invisible thief apprehended and my identity restored. May anyone out there suffering from a chronic illness find peace.
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