So that statement might sound a bit odd - considering i write a blog titled Chronic Fatigue Chronic Hope - but that is the caveat about this illness - it takes a long time for it to sink in - that this isn't something you kind of have - and i think that's how i have always looked at it - I kind of have this thing - its not well defined..it will be resolved sooooon... etc etc...and despite being in the medical field i decided to take a back seat and be a patient for awhile - giving in to trust. In the beginning i was so tired of fighting doctors and their old ways of defining this illness - when i found the one that finally got it - i just let go for awhile. An example, last September when i went for my annual OBGYN appointment my former doctor - when she asked me about exercise and i was really excited since i was up to about 25 minutes of walking - she told me at my age i really need to hit 45 minutes to get a maximum heart rate - i repeated - you do know i have chronic fatigue? And she still went into the benefits of aerobic exercise.
I really don't expect every doctor to know everything - but i do expect people to admit when they are not a specialist in a field - or be curious to learn more. In my irritation i would like to send her all the great research from Sue Jackson's posts - but i am trying to live more zen! When reading these articles i realized i intuitively did many of the suggestions - for example using a chair. Often when i get up and am trying to make breakfast or other meals i need to grab a stool to sit on - I also have trouble emptying the dishwasher - but it is a lot of bending and standing - constantly changing your blood pressure. I have extremely low blood pressure - normally around 90-100/60-70 - and most people when taking it comment how great that is - what they fail to put together i also may have a resting heart rate while seated anywhere from 85 -90 beats per minute - the two don't go together. So it takes that much heart pressure for me to maintain a minimal blood pressure.
I have always known this, but once again, this illness often forces you to believe the unbelievable - so my Mr, Big swim from the day before was a bit overzealous - its just so hard to not push when you feel good - my brain telling me you can't be sick - look you are swimming today - then the crash sets in the next day. I think I will get myself a heart monitor - just for information sake - and to help chart progress - the other articles do a great job of explaining how difficult it is for our bodies to work in an aenorobic state - which for me (except in very young age and 22 - 32) has always been difficult to gain muscle mass -
my thought processes are really off today - but i wanted to get theses articles out -
heart rate these are Sue Jackson's excellent posts regarding orthostatic intolerance - it is helpful for people to understand because so much of this illness is counter-intuitive - and often people will encourage me i should do more or exercise more because that is what normally helps in fatigue situations d/t depression, anxiety, or acute type illnesses -
However, after reading these and consulting with my physician I don't intend to go one beta blockers for numerous reasons - but it also explains why my blood treatments work so well for me because they not only help with the infections but oxygenate my blood - i often feel as if i am starving for air or nutrients - despite breathing fine and just eating - but its this cellular dysfunction that i am very grateful so much research is going into....
alright - that's it for now - hope everyone enjoys the oscars tonight - as always i am looking forward to the jewelry.
Sunday, February 26, 2012
Friday, February 24, 2012
kindling to fire
Or is it a match to kindling? i have always done that - and i won't blame it on "cognitive dysfunction" related to chronic fatigue - that's what that avocado was like yesterday - a little spark that sets off a chain reaction overblown in its intensity. You throw that avocado on damp wood and you get the minor lip tingle, and in an hour or so everything settles back in to normal - add it to an inflamed system fighting off other infections and it rages out of control. It was hard to eat any food last night without getting symptoms and then i got a rash below my left eye and temple and this morning both my eyelids were a bit swollen - you are finally hearing in the mainstream media how the health of your intestines is vital to your overall health. The majority of your immunity lies there, and we now know that getting "butterflies in your stomach" is a true physiological response - one of my favorite books is Molecules of Emotion, Candice Pert - she is brilliant and really "proved" the mind/body connection - but not in a cause/effect way - more that literally every cell in your body has complete memory - i read it too long ago to give you the best review - check it out though -
I read this link Wall Street Journal on Sue Jackson's blog - and beggars can't be choosers (thought i would throw another one in!) but i do hope that the researchers will look at this illness in a more functionally holistic way - meaning - all these "un-related" symptoms are not unrelated - my physician has really been looking at the role of the pituitary gland in my case for two reasons - one its role in immune function and two - that i fell out of a moving car when i was one years old -which has been a punch line in many of the mixed metaphors of my life! Anyways, her theory is that individuals with minor pituitary dysfunction sets of a cascade of problems - so as i patiently listened when i got home i googled away- and sure enough found these two articles pituitary/immune and this Misdiagnosing and found it fascinating. The second article specifically speaks to mis-diagnosis of thyroid dysfunction in patients that had even minor head trauma d/t TSH not working optimally- something a number of doctors told me that it was not possible to have hyperthyroid condition without TSH being out of range first. Well - I did. The point being - I continue to be disillusioned trying to find a magic bullet answer to this complex illness - but am grateful for those pursuing any answers.
I was discussing this point with my physician today, and I said I think there is a void in Western Medicine - think back to Hypocrates, many of the great physicians were artists, philosophers, they were healers...but now the competition to get into medical school is so fierce, it relies so heavily on MCAT scores, those that do well on a standardized test format and have insane GPA's in the sciences - you are getting this very narrow type of person - I know a number of very smart, caring - well rounded individuals that couldn't get into medical school - yet they would have been excellent physicians. Then you have the movement into the specialities - like i said - if you need a heart transplant there is no better place to be than in America - but primary care got so boring with the current medical model - most people walk in diagnosing themselves - because somewhere along the line - prevention - building up immunity etc..got lost - so here we are - this society filled with auto and chronic immune illnesses that rely on pharmaceuticals to stop the symptoms - but where is the restoration of the entire body? The pharmaceutical industry has done a brilliant job at stopping cascading event in our system - but restoring and re-building that's another ball game.
Yesterday, on the AOL newsfeed was the following headline - "what condition do 75% of Asthma Sufferers also have" the answer....GERD the article then went on to say that these conditions were two different diseases, require two different treatments and are unrelated - has everyone lost their mind? Look to chinese medicine, naturopathic medicine, other integrative teachings - and you will realize that they while yes they are different conditions - they are physiologically related - there is often a reason behind the two co-existing. I learned early on, with asthma patients make sure they have enough digestive enzymes and HCl because if they aren't digesting food properly, it will effect their lungs. It is one body - one action has a reaction - and its connected by pathways and transmitters - it is impossible to constantly separate out organs and have a curative effect - you can have a symptom management effect though...
Well - there's my little rant for today....i encourage you to look at yourself in a more holistic way - hopefully the pendulum will begin to swing back again as we see our nation suffering from chronic illness after chronic illness -
(this is out of order - but i can't figure out how to move the entry's around...) (fyi)
I read this link Wall Street Journal on Sue Jackson's blog - and beggars can't be choosers (thought i would throw another one in!) but i do hope that the researchers will look at this illness in a more functionally holistic way - meaning - all these "un-related" symptoms are not unrelated - my physician has really been looking at the role of the pituitary gland in my case for two reasons - one its role in immune function and two - that i fell out of a moving car when i was one years old -which has been a punch line in many of the mixed metaphors of my life! Anyways, her theory is that individuals with minor pituitary dysfunction sets of a cascade of problems - so as i patiently listened when i got home i googled away- and sure enough found these two articles pituitary/immune and this Misdiagnosing and found it fascinating. The second article specifically speaks to mis-diagnosis of thyroid dysfunction in patients that had even minor head trauma d/t TSH not working optimally- something a number of doctors told me that it was not possible to have hyperthyroid condition without TSH being out of range first. Well - I did. The point being - I continue to be disillusioned trying to find a magic bullet answer to this complex illness - but am grateful for those pursuing any answers.
I was discussing this point with my physician today, and I said I think there is a void in Western Medicine - think back to Hypocrates, many of the great physicians were artists, philosophers, they were healers...but now the competition to get into medical school is so fierce, it relies so heavily on MCAT scores, those that do well on a standardized test format and have insane GPA's in the sciences - you are getting this very narrow type of person - I know a number of very smart, caring - well rounded individuals that couldn't get into medical school - yet they would have been excellent physicians. Then you have the movement into the specialities - like i said - if you need a heart transplant there is no better place to be than in America - but primary care got so boring with the current medical model - most people walk in diagnosing themselves - because somewhere along the line - prevention - building up immunity etc..got lost - so here we are - this society filled with auto and chronic immune illnesses that rely on pharmaceuticals to stop the symptoms - but where is the restoration of the entire body? The pharmaceutical industry has done a brilliant job at stopping cascading event in our system - but restoring and re-building that's another ball game.
Yesterday, on the AOL newsfeed was the following headline - "what condition do 75% of Asthma Sufferers also have" the answer....GERD the article then went on to say that these conditions were two different diseases, require two different treatments and are unrelated - has everyone lost their mind? Look to chinese medicine, naturopathic medicine, other integrative teachings - and you will realize that they while yes they are different conditions - they are physiologically related - there is often a reason behind the two co-existing. I learned early on, with asthma patients make sure they have enough digestive enzymes and HCl because if they aren't digesting food properly, it will effect their lungs. It is one body - one action has a reaction - and its connected by pathways and transmitters - it is impossible to constantly separate out organs and have a curative effect - you can have a symptom management effect though...
Well - there's my little rant for today....i encourage you to look at yourself in a more holistic way - hopefully the pendulum will begin to swing back again as we see our nation suffering from chronic illness after chronic illness -
(this is out of order - but i can't figure out how to move the entry's around...) (fyi)
A little sex...
In the City that is! okay - while i was getting my blood treatment today and gabbing away to distract myself - both my doctor and my fellow neighboring patient commented on how funny i am...i'm no stand up - that would be my cousin Jack - but I do have a pretty good sense of humor - they were saying i should be writing about my take on camping - and i told them i have a hard time conveying humor in my writing - so i will try to work on that.
i have a post that i began this morning as my eyes were both swollen, and rash on my face - lingering effects of avocado gate - and my body was once again craving my blood treatment - in my gut i just new it was what would bring me some relief - and sure enough it didn't disappoint.
so when i got back here, i was ready to go the pool - by the time i walked over i was out of breathe - it only took a few minutes to recover - and since its quite warm her in phoenix today i didn't waste much time getting into the water. after about my sixth lap someone else got in and was swimming next to me - and i couldn't help but think...hmm he looks a lot like Chris Noth - and after the second time of us being at the same end of the pool - i blurted - "do you just look a lot like Chris Noth or are you Chris Noth" and he politely responded - "I am Chris Noth" - then i said "You do really good work" - "He said thanks" and we went on swimming. After, as he was on a lounge chair reading a script i was worried that if it shows up where he is that he might think I tweeted it - i should of assured him - no i might just mention you on my blog...
I won't lie - it gave me a little extra kick! It was that out of the ordinary moment that added to an already much better day than yesterday - i've heard stories of individuals that have lived with alcoholics and one of the worst parts about it is the unpredictability of that person - walking on egg shells never knowing who you may get - just like those awful experiments they do with mice - where if they are shocked at a predictable interval they can handle it, but if its random it drives them crazy - (thinking way back to psych 101) but the point being there is an element of that to this illness - yesterday this tiny bit of avocado through my system into chaos - and today i'm swimming with Mr. Big! (this one's for you nerd) - I'll take today.
i have a post that i began this morning as my eyes were both swollen, and rash on my face - lingering effects of avocado gate - and my body was once again craving my blood treatment - in my gut i just new it was what would bring me some relief - and sure enough it didn't disappoint.
so when i got back here, i was ready to go the pool - by the time i walked over i was out of breathe - it only took a few minutes to recover - and since its quite warm her in phoenix today i didn't waste much time getting into the water. after about my sixth lap someone else got in and was swimming next to me - and i couldn't help but think...hmm he looks a lot like Chris Noth - and after the second time of us being at the same end of the pool - i blurted - "do you just look a lot like Chris Noth or are you Chris Noth" and he politely responded - "I am Chris Noth" - then i said "You do really good work" - "He said thanks" and we went on swimming. After, as he was on a lounge chair reading a script i was worried that if it shows up where he is that he might think I tweeted it - i should of assured him - no i might just mention you on my blog...
I won't lie - it gave me a little extra kick! It was that out of the ordinary moment that added to an already much better day than yesterday - i've heard stories of individuals that have lived with alcoholics and one of the worst parts about it is the unpredictability of that person - walking on egg shells never knowing who you may get - just like those awful experiments they do with mice - where if they are shocked at a predictable interval they can handle it, but if its random it drives them crazy - (thinking way back to psych 101) but the point being there is an element of that to this illness - yesterday this tiny bit of avocado through my system into chaos - and today i'm swimming with Mr. Big! (this one's for you nerd) - I'll take today.
Thursday, February 23, 2012
freedom's in your heart - 2/21
I probably shouldn't have drove home yesterday from my appointment - but i felt really good prior to it. I was driving singing out loud - windows open - lucky to be in the sunshine- but everything started to fade - like the air slowly being let out of a balloon. I had all my snacks with me - sometimes i look like a mother of a toddler - everything you may need - but i'm the 3 year old. I felt okay leaving, but then stopped at the grocery store and i knew things were getting bad when i couldn't multi-task. My mom called to check in on me and i couldn't talk - i became robotic in thinking...like that little girl that was on sesame street...a cup of sugar, gallon of milk, stick of butter...over and over.
By the time I got home, all I could do is get in bed. My friend was coming over later to help with dinner but by 5pm i had to get out of bed and worked slowly to prepare something to eat. By the time my friend got here - the act of making dinner and eating just tipped the scale and it was like i was no longer singing rolling the deep - i was spinning down deep.
so today there was no option but to take a car to my appointment. i was lucky to sleep hard and when i woke it was tough to move. once again, the robotic thinking began. Juice - Bed. Okay, could barely feel my feet below me - and i didn't want to have the phone away from me, worried i would fall and be like the lady in the commercials! "i've fallen and i can't get up!" Next step - eat. Okay, you can make it - that's done - back to bed. Oh, and all the digestion issues i have decided not to share - google it - then when i made it back to get ready i just looked hard at myself in the mirror - focus - focus - you can do this - again. Wash face. Done. Moisturize. Done. Brush teeth. Done. Breathe. Breathe. Okay - look presentable - fake it - fake it. Not bad. Back to lay down.
Now its time for lunch - i know i'm getting a blood draw today - need to eat. slowly slowly. Alright, feeling a bit human. Car is here. I get in, and the thing is - I really like people. Its not a small talk thing, i have always enjoyed meeting and learning about other people. So when I give the address to the driver - John - i make a joke not to worry that I'm not contagious. John asked me questions, and then talked to me about his childhood, it was one surrounded by opportunities to make poor choices. He talked about a man he knew that served 10 years in maximum security prison and after being released he told John that he was more free in prison than he had been before - and was trying to teach John the lessons he had never learned. John said he was only about six and couldn't understand in his early youth what he meant - but has he became a teen and saw the world around him - he knew exactly what he meant. The words that man told him became his mantra - that "freedom is in your heart."
As i sat in the plush leather seats, looking out the window -i thought about how this illness takes many of your freedoms - but there are elements all around us that can never steal the freedom of our hearts -
After my appointment, we rode quietly back, i sunk into the back seat - sunglasses on - pretending this black sedan was driving me for a different reason - day dreaming - i made it. As my eyes were closed behind my glasses - and i was drifting - John interrupted the thoughts in my head - and out of no where - said that I was very brave. And it meant so much to me, because this illness makes you feel anything but brave and I felt grateful once more for the kindness of strangers.
When, I got inside the house, and talked to my friend on the phone and she was telling me about her what a great day she was having because someone called and complemented her on her work - and how good it made her feel. Then she hung up the phone and a co-worker made a dumb blonde joke, and how in an instant it changed her mood. And I thought again about my "driving miss daisy" experience today, and how the kind words did much to lift my spirits. Its always a reminder how powerful our words are to others and the effect they have on others...thanks john.
By the time I got home, all I could do is get in bed. My friend was coming over later to help with dinner but by 5pm i had to get out of bed and worked slowly to prepare something to eat. By the time my friend got here - the act of making dinner and eating just tipped the scale and it was like i was no longer singing rolling the deep - i was spinning down deep.
so today there was no option but to take a car to my appointment. i was lucky to sleep hard and when i woke it was tough to move. once again, the robotic thinking began. Juice - Bed. Okay, could barely feel my feet below me - and i didn't want to have the phone away from me, worried i would fall and be like the lady in the commercials! "i've fallen and i can't get up!" Next step - eat. Okay, you can make it - that's done - back to bed. Oh, and all the digestion issues i have decided not to share - google it - then when i made it back to get ready i just looked hard at myself in the mirror - focus - focus - you can do this - again. Wash face. Done. Moisturize. Done. Brush teeth. Done. Breathe. Breathe. Okay - look presentable - fake it - fake it. Not bad. Back to lay down.
Now its time for lunch - i know i'm getting a blood draw today - need to eat. slowly slowly. Alright, feeling a bit human. Car is here. I get in, and the thing is - I really like people. Its not a small talk thing, i have always enjoyed meeting and learning about other people. So when I give the address to the driver - John - i make a joke not to worry that I'm not contagious. John asked me questions, and then talked to me about his childhood, it was one surrounded by opportunities to make poor choices. He talked about a man he knew that served 10 years in maximum security prison and after being released he told John that he was more free in prison than he had been before - and was trying to teach John the lessons he had never learned. John said he was only about six and couldn't understand in his early youth what he meant - but has he became a teen and saw the world around him - he knew exactly what he meant. The words that man told him became his mantra - that "freedom is in your heart."
As i sat in the plush leather seats, looking out the window -i thought about how this illness takes many of your freedoms - but there are elements all around us that can never steal the freedom of our hearts -
After my appointment, we rode quietly back, i sunk into the back seat - sunglasses on - pretending this black sedan was driving me for a different reason - day dreaming - i made it. As my eyes were closed behind my glasses - and i was drifting - John interrupted the thoughts in my head - and out of no where - said that I was very brave. And it meant so much to me, because this illness makes you feel anything but brave and I felt grateful once more for the kindness of strangers.
When, I got inside the house, and talked to my friend on the phone and she was telling me about her what a great day she was having because someone called and complemented her on her work - and how good it made her feel. Then she hung up the phone and a co-worker made a dumb blonde joke, and how in an instant it changed her mood. And I thought again about my "driving miss daisy" experience today, and how the kind words did much to lift my spirits. Its always a reminder how powerful our words are to others and the effect they have on others...thanks john.
A to Z...
You ever feel like throwing something - i'm in the mood to smash a bunch of plates - but considering they're not my plates i better reconsider. I thought of this because i heard a funny story yesterday about someone's boss being so angry she threw a frame across the room - and it cracked me up - such a visceral childish act - but it gets the point across...so instead of throwing plates i am going to throw some words - A to Z style...last night i was laying in bed with my window to the world these two "stars" were so bright and one exactly on top of the other...they were mesmerizing - turns out they were venus and mercury. It gave me such a sense of calm and today when i woke up i felt better than i had in weeks. Then it all came crashing down because I got a breakfast sandwich and it had a bit of avocado on it - and despite picking it off, the english muffin must have shared the cutting board because within minutes of eating it, my lip started to swell a bit and my throat was all itchy - and i wanted to throw some plates - because i finally wasn't' exhausted - but soon was face down in bed from the 2 Benadryls i took -
so here we go...if there was a noise affect imagine porcelain crashing
A - Avocado, Allergies -
B - Bananas
C - Carrots
D - Damn it Damn it
E - Exhausted
F - well, you can guess
G - Give me a "F"ing break
H - Humor needed
I - Irate
J - Jack ass
K - Kicking and screaming
L - Laughing
M- Mercury
N - Never - give up
O - Optimism
P- Pessimism
Q - Quiet
R- Rest
S - Swimming
T- Too much
U - UUGGGHHH
V- Venus
W - When
X - X-
Y - Y -
Z - Z -
Nothing like screaming X, Y, and Z
But i will focus on N -
And Mercury and Venus...its a big big universe....you have to look hard to see - in the darkness you find light
so here we go...if there was a noise affect imagine porcelain crashing
A - Avocado, Allergies -
B - Bananas
C - Carrots
D - Damn it Damn it
E - Exhausted
F - well, you can guess
G - Give me a "F"ing break
H - Humor needed
I - Irate
J - Jack ass
K - Kicking and screaming
L - Laughing
M- Mercury
N - Never - give up
O - Optimism
P- Pessimism
Q - Quiet
R- Rest
S - Swimming
T- Too much
U - UUGGGHHH
V- Venus
W - When
X - X-
Y - Y -
Z - Z -
Nothing like screaming X, Y, and Z
But i will focus on N -
And Mercury and Venus...its a big big universe....you have to look hard to see - in the darkness you find light
Sunday, February 19, 2012
will i remember
I have a chronic condition, it could be worse - i could have a chronic progressive, for instance rheumatoid arthritis or chronic terminal - ALS or Parkinson's - but none the less - its chronic - and there are many days i wonder - will i remember what it feels like to be well? Or has this new reality integrated itself into my cells to the extent that i won't have the ability to remember what i was like before. I have those moments of relief, the brief one's where i feel exactly like i did before all of this - despite their fleeting nature they are tiny reminders of my hope that once i get better i will remember. The longer this goes on, and you are continually forced to alter your lifestyle to manage this illness - which habits will take a firm hold and continue the path of dis-ease? I continue to focus on the goal of stringing enough good days together, that a new rhythm will be born. But what about all the habits that have been formed to make the best of each day...will i easily let them go?
I have had a few people mention to me that they didn't' realize how bad it had gotten or said they weren't sure how to approach me regarding this illness, and i take responsibility for that - i had been so afraid if i "acted" the way i felt - that it would be a reality that never left. So i would do my best to get it together for brief moments of time - i had learned long ago dealing with panic disorder how to act completely differently than the inner turmoil i felt inside. I also was struggling with doctor after f'ing doctor that kept telling me this was all in my head. So for two years, I was fighting to stay above 100 lbs, fighting through a fog of crappy anti-depessants that i didd't need - and wondering if i wasn't just crazy. That is not my story alone it is shared by so many of us suffering from this illness. Therefore, it was difficult to know what to say or how to act - i was literally just surviving.
This past few days and the next two i have been and will be in phoenix by myself - and despite living many years on my own - its been rough. This illness has forced an already cautious person to become hyper-vigilant. We needed to make food in advance in case i couldn't leave the house, i have my doctor's home cell number because she is a saint, and luckily my good friend's schedule has allowed her to stop in last night and this afternoon. I laugh reminiscing that i once counted all the places i had lived at from graduating high school until now - I had lived in over 20. Sometimes alone, others with roommates, from Milwaukee - to Colorado - California to France. I had no dishwashers, basement laundry, street parking...none of that mattered - the point - I loved my independence and I loved the constant change. Forced to be dependent on other's is a reality that I had fought hard against in the beginning. Its also difficult because as much as i would like to pretend CFS/ME hasn't taken a part of who i am at the core - it has eroded many of the characteristics i had defined myself by. I use to be comfortable in the presence of anyone...but now
Its a double edged sword, I need help, but it takes a lot of emotional energy if it isn't the "right" person - i don't mean the most loving, or nurturing - it takes someone you feel extremely comfortable with that has accepted this new version of yourself and doesn't expect to find the old one.
You remember when you first went off to college, became a new mother or father - or took a grown up job and with these changes met an entire new set of friends - and then you thought - let's all get together - your "childhood - known you forever friends" and the "new" friends; in your blinded excitement you are shocked that perhaps when these groups co-exhist they have nothing in common or don't bond - well bingo - they don't. They know two different people. They have different experiences with you and have formed their own "picture" of who you are based on their current information. The beauty of your friends forever is that they are more like siblings - and they have formed a deep understanding of what makes you tick- the flip side is that its often harder for them to see that you have changed - and in my case not by choice. This is how I feel much of the time - people see me, but no longer know exactly who i am -
I would give anything to be all the adjectives that I had been proud to define myself as before this illness -
I took pride that i was a loyal, dependable friend, easy to be around, could adapt to most any social situation, could give someone my full attention, loved to travel and go out to dinner. I was an extremely hard worker, loved to volunteer, and could hang for hours with friends - but this illness has slowly whittled away many of the parts of me i was most proud of. I just don't have the energy - I try not to focus on what i have given up, but it is the current reality - heck, for example i haven't been able to go and get my hair cut - i am now allergic to hair dye (which i loved) the smell at salons irritates my entire nervous system - i can't plan in advance, and i need a haircut that i doesn't require a blow dry or on some days even comb out - pony tail it is...this is the new reality. I'm resourceful and find solutions, for instance my cousin Paul is generous enough to makes a house call - but its not the same.
I'm no longer the easiest dinner guest - since i have loads of foods you can't serve and i may cancel at the last minute- i have this insane sense of smell that if you are wearing too much cologne or have scented candles i begin to get a massive headache - if the room is too hot i begin to get light headed - if there is too much stimulation and i am having a weak day i can't focus on all the conversations - i no longer can drink - which i never did to excess - but boy would i love to be back at Vitucci's with a Captain and Coke! I get it - I look the same, and most days put my best smile forward and act the same - there in the language is the truth - its a lot of acting. Everything that defined me so easily, i have to fight to save. So all of this together forms a snippet of my former self - and i have found some people have had a tough time knowing how to deal with this "new" person - hell - I don't know how to deal with her either!
So, I will tell you what helps - patience helps. understanding helps. kindness helps, a note or a text helps. Following this blog helps. Accepting that i am a smart person and the treatments i have chosen i have chosen because i have researched it all and they are the best for me. Reading about this illness and understanding, that maybe i didn't share all the crappy details because i just kept thinking - tomorrow - tomorrow they will go away - but many tomorrows have passed and i'm still fighting.
Its still me - but to pretend it hasn't taken a bit of who i am - that's just 'magical thinking (joan didion)' -
this makes me smile...sweet G.P.
this too...Addison
I have had a few people mention to me that they didn't' realize how bad it had gotten or said they weren't sure how to approach me regarding this illness, and i take responsibility for that - i had been so afraid if i "acted" the way i felt - that it would be a reality that never left. So i would do my best to get it together for brief moments of time - i had learned long ago dealing with panic disorder how to act completely differently than the inner turmoil i felt inside. I also was struggling with doctor after f'ing doctor that kept telling me this was all in my head. So for two years, I was fighting to stay above 100 lbs, fighting through a fog of crappy anti-depessants that i didd't need - and wondering if i wasn't just crazy. That is not my story alone it is shared by so many of us suffering from this illness. Therefore, it was difficult to know what to say or how to act - i was literally just surviving.
This past few days and the next two i have been and will be in phoenix by myself - and despite living many years on my own - its been rough. This illness has forced an already cautious person to become hyper-vigilant. We needed to make food in advance in case i couldn't leave the house, i have my doctor's home cell number because she is a saint, and luckily my good friend's schedule has allowed her to stop in last night and this afternoon. I laugh reminiscing that i once counted all the places i had lived at from graduating high school until now - I had lived in over 20. Sometimes alone, others with roommates, from Milwaukee - to Colorado - California to France. I had no dishwashers, basement laundry, street parking...none of that mattered - the point - I loved my independence and I loved the constant change. Forced to be dependent on other's is a reality that I had fought hard against in the beginning. Its also difficult because as much as i would like to pretend CFS/ME hasn't taken a part of who i am at the core - it has eroded many of the characteristics i had defined myself by. I use to be comfortable in the presence of anyone...but now
Its a double edged sword, I need help, but it takes a lot of emotional energy if it isn't the "right" person - i don't mean the most loving, or nurturing - it takes someone you feel extremely comfortable with that has accepted this new version of yourself and doesn't expect to find the old one.
You remember when you first went off to college, became a new mother or father - or took a grown up job and with these changes met an entire new set of friends - and then you thought - let's all get together - your "childhood - known you forever friends" and the "new" friends; in your blinded excitement you are shocked that perhaps when these groups co-exhist they have nothing in common or don't bond - well bingo - they don't. They know two different people. They have different experiences with you and have formed their own "picture" of who you are based on their current information. The beauty of your friends forever is that they are more like siblings - and they have formed a deep understanding of what makes you tick- the flip side is that its often harder for them to see that you have changed - and in my case not by choice. This is how I feel much of the time - people see me, but no longer know exactly who i am -
I would give anything to be all the adjectives that I had been proud to define myself as before this illness -
I took pride that i was a loyal, dependable friend, easy to be around, could adapt to most any social situation, could give someone my full attention, loved to travel and go out to dinner. I was an extremely hard worker, loved to volunteer, and could hang for hours with friends - but this illness has slowly whittled away many of the parts of me i was most proud of. I just don't have the energy - I try not to focus on what i have given up, but it is the current reality - heck, for example i haven't been able to go and get my hair cut - i am now allergic to hair dye (which i loved) the smell at salons irritates my entire nervous system - i can't plan in advance, and i need a haircut that i doesn't require a blow dry or on some days even comb out - pony tail it is...this is the new reality. I'm resourceful and find solutions, for instance my cousin Paul is generous enough to makes a house call - but its not the same.
I'm no longer the easiest dinner guest - since i have loads of foods you can't serve and i may cancel at the last minute- i have this insane sense of smell that if you are wearing too much cologne or have scented candles i begin to get a massive headache - if the room is too hot i begin to get light headed - if there is too much stimulation and i am having a weak day i can't focus on all the conversations - i no longer can drink - which i never did to excess - but boy would i love to be back at Vitucci's with a Captain and Coke! I get it - I look the same, and most days put my best smile forward and act the same - there in the language is the truth - its a lot of acting. Everything that defined me so easily, i have to fight to save. So all of this together forms a snippet of my former self - and i have found some people have had a tough time knowing how to deal with this "new" person - hell - I don't know how to deal with her either!
So, I will tell you what helps - patience helps. understanding helps. kindness helps, a note or a text helps. Following this blog helps. Accepting that i am a smart person and the treatments i have chosen i have chosen because i have researched it all and they are the best for me. Reading about this illness and understanding, that maybe i didn't share all the crappy details because i just kept thinking - tomorrow - tomorrow they will go away - but many tomorrows have passed and i'm still fighting.
Its still me - but to pretend it hasn't taken a bit of who i am - that's just 'magical thinking (joan didion)' -
this makes me smile...sweet G.P.
this too...Addison
Thursday, February 16, 2012
Water Color Sunrise
my favorite holiday came and went - you got it Valentine's Day...its not as exciting as you get older - but i love the possibilities mine or another's that it holds. It's a good news April Fool's day - you just never know what can happen - sure most come and go with nothing out of the ordinary but then there are those that you get a message or note from someone you never expected and it makes your heart swell. The generosity of someone going an extra mile to let you know you are special to them, whether its a friend or significant other.
well, this valentines' not only did my heart swell - but apparently so did my spleen and liver - i'm not particularly concerned considering my high Epstein Barr and Cytomegalovirus titers - this is not an uncommon result. if they don't improve in a few weeks - i'll get an ultra-sound.
but the best gift on Valentine's was for almost 12 hours all my symptoms magically disappeared. It was a piece of heaven - and then yesterday it all came crashing down - and most of today - but by three o'clock i had enough energy to walk up to the hotel and grab a coffee and sit on the adirondack chair with sophie by my side and i just pretended i was like all the other vacationers - and for about an hour i felt like it. the joy of the everyday. i people watched, sipped a coffee with no reactions - and even took a few touristy pictures -
i've had a bit of a mental block trying to write - but when i am drifting off to sleep or in the shower, i am constantly thinking of the idea of the perfect sentence. it doesn't come often or easily - and some of us can maybe hope for one in a great while...
when i was in france with my grandma and mom we went to the "musee de l'orangerie" in paris. we had just returned from Lourdes so my grandmother could get the healing water - and let me tell you that place is a bit scary - even my grandma couldn't wait to leave...and i don't doubt at one point it was a very healing place, but now its an over-run town that will sell you anything with the virgin mary slapped to it - but when we walked into the lower level of that museum in paris where in a circular room you are surrounded by these massive Monet's it takes your breathe away - and i said to my grandma - this is a miracle and my die hard catholic grandmother understood.
there is some beauty that transcends your senses - it takes you to a different place as you try to wrap your rational brain around it - the perfect sentence has the same transcendent feeling - the books that stand the test of time are those that string perfect sentences together again and again and again - the idea that all these words are available to us, yet someone put them together in a way no one had thought to before is magic.
i have always loved words - i loved in kindergarten our letter books - i still remember the glittered "A" Apple book, the feel of the number two pencil gliding across the shiny pages - and then later learning how to "diagram" sentences - noun - verb - adverb...i loved being in the elm grove library summer reading program...i knew i was sick when i no longer could read novels - the effort it took to read a book would take me days to recover - and i had to be careful to take breaks - rather than spend an afternoon immersed in the other world.
the arts always hold us hostage to beauty and when you are not well you have to remind yourself that its there around you for your taking. and the arts are different for everyone, ellen recently had a man who after a skiing accident is paraplegic - yet he has found a way to still ski and complete an arial jump - he described movement as his form of art and expression - and the joy it brings him. joy - when you are fighting through a chronic illness its hard some days to find the beauty around you - but you can't lose sight that it is there. the place i am living we have been gifted with some of the most gorgeous sunsets - as i jokingly said - "people would pay big bucks to see this..." on the worst of the days the world seems black - and its hard to believe in the power of a Monet, the perfect lyrics meeting the perfect melody, a two doves that sit side by side on the iron fence outside my bedroom window every morning - or the perfect sentence - but they are there - and in our darkest hours they save us - some days you have to fight harder to find them.
i know i have been privileged to be exposed to the arts - and i don't know what it is like to live in a world where i have been deprived of that knowledge and experience - my hope is all those out there fighting to bring the freedom of the arts to those less fortunate are continued to be supported. thanks mom and dad for giving me that gift of exposure and travel - and i will fight to the end to get back to that museum in paris and find that piece of perfection on earth.
side-bar
okay - i am so expletive proud of myself for figuring out how to get these photos from my phone- to my computer - to this blog i don't care they are not in the correct spot - okay Apple - you are growing on me! fyi i know sophie looks miserable but it because poor thing when i bent down to take off her leash my Fiji water fell out of my sweatshirt and nearly hit her - so she was still recovering!!
*water color sunrise - credit to willy porter song*
also a shout out to my dear friend who we use to walk along lake michigan many moons ago - thank you.
well, this valentines' not only did my heart swell - but apparently so did my spleen and liver - i'm not particularly concerned considering my high Epstein Barr and Cytomegalovirus titers - this is not an uncommon result. if they don't improve in a few weeks - i'll get an ultra-sound.
but the best gift on Valentine's was for almost 12 hours all my symptoms magically disappeared. It was a piece of heaven - and then yesterday it all came crashing down - and most of today - but by three o'clock i had enough energy to walk up to the hotel and grab a coffee and sit on the adirondack chair with sophie by my side and i just pretended i was like all the other vacationers - and for about an hour i felt like it. the joy of the everyday. i people watched, sipped a coffee with no reactions - and even took a few touristy pictures -
i've had a bit of a mental block trying to write - but when i am drifting off to sleep or in the shower, i am constantly thinking of the idea of the perfect sentence. it doesn't come often or easily - and some of us can maybe hope for one in a great while...
when i was in france with my grandma and mom we went to the "musee de l'orangerie" in paris. we had just returned from Lourdes so my grandmother could get the healing water - and let me tell you that place is a bit scary - even my grandma couldn't wait to leave...and i don't doubt at one point it was a very healing place, but now its an over-run town that will sell you anything with the virgin mary slapped to it - but when we walked into the lower level of that museum in paris where in a circular room you are surrounded by these massive Monet's it takes your breathe away - and i said to my grandma - this is a miracle and my die hard catholic grandmother understood.
there is some beauty that transcends your senses - it takes you to a different place as you try to wrap your rational brain around it - the perfect sentence has the same transcendent feeling - the books that stand the test of time are those that string perfect sentences together again and again and again - the idea that all these words are available to us, yet someone put them together in a way no one had thought to before is magic.
i have always loved words - i loved in kindergarten our letter books - i still remember the glittered "A" Apple book, the feel of the number two pencil gliding across the shiny pages - and then later learning how to "diagram" sentences - noun - verb - adverb...i loved being in the elm grove library summer reading program...i knew i was sick when i no longer could read novels - the effort it took to read a book would take me days to recover - and i had to be careful to take breaks - rather than spend an afternoon immersed in the other world.
the arts always hold us hostage to beauty and when you are not well you have to remind yourself that its there around you for your taking. and the arts are different for everyone, ellen recently had a man who after a skiing accident is paraplegic - yet he has found a way to still ski and complete an arial jump - he described movement as his form of art and expression - and the joy it brings him. joy - when you are fighting through a chronic illness its hard some days to find the beauty around you - but you can't lose sight that it is there. the place i am living we have been gifted with some of the most gorgeous sunsets - as i jokingly said - "people would pay big bucks to see this..." on the worst of the days the world seems black - and its hard to believe in the power of a Monet, the perfect lyrics meeting the perfect melody, a two doves that sit side by side on the iron fence outside my bedroom window every morning - or the perfect sentence - but they are there - and in our darkest hours they save us - some days you have to fight harder to find them.
i know i have been privileged to be exposed to the arts - and i don't know what it is like to live in a world where i have been deprived of that knowledge and experience - my hope is all those out there fighting to bring the freedom of the arts to those less fortunate are continued to be supported. thanks mom and dad for giving me that gift of exposure and travel - and i will fight to the end to get back to that museum in paris and find that piece of perfection on earth.
side-bar
okay - i am so expletive proud of myself for figuring out how to get these photos from my phone- to my computer - to this blog i don't care they are not in the correct spot - okay Apple - you are growing on me! fyi i know sophie looks miserable but it because poor thing when i bent down to take off her leash my Fiji water fell out of my sweatshirt and nearly hit her - so she was still recovering!!
*water color sunrise - credit to willy porter song*
also a shout out to my dear friend who we use to walk along lake michigan many moons ago - thank you.
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