I often get overwhelmed that I am not getting better fast enough. So today at my appointment we discussed where we have been and where we are headed. This illness doesn't often have a linear course - so we are doing the best we can. I feel like I have been fighting this illness for a long time, but when we broke it down, I realized that wasn't exactly correct. Last winter was the first time I spent over 2 weeks in Phoenix for treatments, and the majority of the time was not focused on my chronic illness, it was trying to get my strength back from being beaten down by the winter. I could handle very little and the focus was getting my lungs healthy again, so I wasn't constantly using the steroid nebulizer to deal with the reactive airway disease brought on by so many colds. Reactive - that seems to be theme - I have a reactive system.
Therefore, October of 2011 was the first proactive step of getting ahead of the winter cold and flu season. I made it through the Holidays and headed here to Phoenix in January. January 10th - April 20th is just over 3 months, approximately 15 weeks - add that to the 6 weeks in October and that's 21 weeks out of 52 in the year - to treat a chronic illness that I have had for at least 6 years - or 312 weeks. All of a sudden hope became a lot clearer - I know have a plan - for the first few years - I was sailing without a GPS.
I have been able to consistently write, something I could only do in my head a few years back - today I drove to my doctor appointment by myself - confident that no matte what treatment I had I could handle driving home. My greatest fear I told my doctor is spending all this time and energy and getting almost better - then doing too much and to slip back worse than before. So we both agreed that the likely course of action would be to be a similar protocol next year, and then be confident we can wean off. This protocol would be different if I lived in Phoenix - but I don't anymore and the summer months here are as detrimental to my health as the winter in Wisconsin - extremes - my body doesn't handle extremes well.
Time despite its regimented 60 seconds in a minute - 60 minutes in an hour - 24 hours in a day - 7 days in a week - 52 weeks in a year - despite this mathematical exactness defies rules. It speeds up and slows down when we wish it would do the opposite. Its an eternity and and instant - and I need to patient with time.
But today I needed a little perspective on time, and I feel grateful - I haven't been attacking this illness as long as I have been fighting it. I am not swimming as much or walking as much as when I first got here, but I am doing much more difficult treatments, so I am listening to the voice inside that says rest - your time will come - just rest. Its not easy, having faith in an unknown and different path - but if this works for me - I have made a promise to myself that when my old energy - life force - vitality returns, I will do my best to help others that are making little or no progress. But right now I can only fight one battle - my own. And I'm scared to even say it - but I may be gaining ground.
Monday, March 26, 2012
Sunday, March 25, 2012
B.S. - not what you think..I'm LOL
Some people are just funny. I know many such people, and it helps. Finding humor in any situation is the surest way to ease the pain. And as I like to do, give credit when credit is due, a thank you for the humorous exchange of text messages I received last night when I did not have enough energy to meet an old friend who happened to be in town...trying to be honest about why I was "on the desert"- in the quick exchange of a text message is not the easiest, but I didn't want to lie or make up some false excuse- and the forthcoming exchange I got made me laugh - and laughing always makes you feel better - so maybe I will try some 5 hour energy drink - and I will definately blame Wade when everything else fails - why not, who knows... (and I apologize for a bit of inside humor here, so please insert your own good memories of old friends)
There is a huge difference between someone making "light" of my situation and someone making the best of it using humor, something when I am a bit isolated in the day to day grind of it all is easy to miss - and the sarcasm brought me back to our high school days, days spent dancing in LaBott's basement to Neil Diamond, late nights of "phone fun"..."ma'am we have your cat..", Three Guys in Jumpsuits making crazy videos. It was nice going back in time, a time where there were plenty of problems, but problems that the heaviness of it all doesn't' sink in or isn't the burden of a 16 year old. While we were in the basement, upstairs was a grandmother fighting dementia, a mother fighting cancer, and hopefully the hustle and bustle of teenagers in her house provided a necessary distraction rather than an annoying inconvenience. I am pretty sure, the later may have been truth...but again, the protectiveness of a mother came out, putting her children's escapism in front of her own privacy. Thank you Nancy - you are missed.
When my niece was here she kept taking my phone and taking massive amount of pictures and videos, and when I went through the 300 plus of them what caught me off guard were the images of myself that were caught in the background, and the story they told. I noticed the pained look in my face, the holding on look of getting by when I didn't realize someone was looking, the fingers pressing on my temple. These pictures and videos made me sad, and I realized I don't laugh as much since this illness. Those around me day in and day out are constantly helping me with one thing or another, and with that spontaneous moments of laughter are fewer and further between - its not any one's fault, its the reality of the demands and stress this illness ripples through those you love, the exhaustion of the sameness of it all - and those text messages last night from someone on the "outside" were a pleasant distraction - and I hope that they are the new normal in the near future.
There is a huge difference between someone making "light" of my situation and someone making the best of it using humor, something when I am a bit isolated in the day to day grind of it all is easy to miss - and the sarcasm brought me back to our high school days, days spent dancing in LaBott's basement to Neil Diamond, late nights of "phone fun"..."ma'am we have your cat..", Three Guys in Jumpsuits making crazy videos. It was nice going back in time, a time where there were plenty of problems, but problems that the heaviness of it all doesn't' sink in or isn't the burden of a 16 year old. While we were in the basement, upstairs was a grandmother fighting dementia, a mother fighting cancer, and hopefully the hustle and bustle of teenagers in her house provided a necessary distraction rather than an annoying inconvenience. I am pretty sure, the later may have been truth...but again, the protectiveness of a mother came out, putting her children's escapism in front of her own privacy. Thank you Nancy - you are missed.
When my niece was here she kept taking my phone and taking massive amount of pictures and videos, and when I went through the 300 plus of them what caught me off guard were the images of myself that were caught in the background, and the story they told. I noticed the pained look in my face, the holding on look of getting by when I didn't realize someone was looking, the fingers pressing on my temple. These pictures and videos made me sad, and I realized I don't laugh as much since this illness. Those around me day in and day out are constantly helping me with one thing or another, and with that spontaneous moments of laughter are fewer and further between - its not any one's fault, its the reality of the demands and stress this illness ripples through those you love, the exhaustion of the sameness of it all - and those text messages last night from someone on the "outside" were a pleasant distraction - and I hope that they are the new normal in the near future.
Rainy Days and Sundays Always Get Me Down...
Friday, the morning after the MU game, I didn't wake up until 10am. When I did, it was difficult to move, I started one of my mini mantras - get out of bed...get out of bed...feet on ground...head off pillow...so like a band-aid I ripped myself out of bed and slowly got to the task of making breakfast. Again, the single minded thinking began, and no sooner am I eating breakfast when a new mantra begins... eat..back to bed...eat...back to bed...
So by 11am I was crashed back into bed, my doctor appointment was scheduled at 1:30pm. So as my head plummeted to the pillow I was doing a mental calculation of how long I could lay down before I would need to get up, get ready and eat before heading out...12:15, 12:30 at the very latest - because I eat slower than black molassas pours I need extra time. At 12:45pm my phone rings and wakes me up from a deep sleep, its my mom seeing how the game was last night (minus the loss) I, barely audible, tell her I have to call her back, disorientated and now wondering how the heck I am going to get it together and get to my appointment - I contemplate not going - but its a Friday, and if I don't make it and miss out on a treatment that could potentially make me feel better, it puts things off three entire days. So I slowly make it out of bed, mantra now - juice - get ready - juice - get ready. The second I have a sip of juice I feel like I am going to be sick - so I make it to the bathroom - I want to just forget it - who cares - its one appointment. I am thankful I am not throwing up, but I have the nauseous chills and goose bumps on my arms, but thankful that my stomach is at least moving in gravity's direction.
I make it out of the bathroom, I look in the mirror and can't believe that is me staring back - I look old and tired, vibrant would not be an adjective that comes to mind. I am just about to throw in the towel and think I just can't' F'ing do this anymore, I don't know how I can keep doing this, like you do when you are in the middle of a dense forest and can't find your way out (not that I have ever been in the middle of the forest, but I imagine) and the "ding" on my phone goes off - I go to check it and this is what I find...
So by 11am I was crashed back into bed, my doctor appointment was scheduled at 1:30pm. So as my head plummeted to the pillow I was doing a mental calculation of how long I could lay down before I would need to get up, get ready and eat before heading out...12:15, 12:30 at the very latest - because I eat slower than black molassas pours I need extra time. At 12:45pm my phone rings and wakes me up from a deep sleep, its my mom seeing how the game was last night (minus the loss) I, barely audible, tell her I have to call her back, disorientated and now wondering how the heck I am going to get it together and get to my appointment - I contemplate not going - but its a Friday, and if I don't make it and miss out on a treatment that could potentially make me feel better, it puts things off three entire days. So I slowly make it out of bed, mantra now - juice - get ready - juice - get ready. The second I have a sip of juice I feel like I am going to be sick - so I make it to the bathroom - I want to just forget it - who cares - its one appointment. I am thankful I am not throwing up, but I have the nauseous chills and goose bumps on my arms, but thankful that my stomach is at least moving in gravity's direction.
I make it out of the bathroom, I look in the mirror and can't believe that is me staring back - I look old and tired, vibrant would not be an adjective that comes to mind. I am just about to throw in the towel and think I just can't' F'ing do this anymore, I don't know how I can keep doing this, like you do when you are in the middle of a dense forest and can't find your way out (not that I have ever been in the middle of the forest, but I imagine) and the "ding" on my phone goes off - I go to check it and this is what I find...
and I find the strength. I have a blog that I haven't published about Kids - and my opinion on the annoying phrase that parents often use that "they never have known love until they had a child" and I won't get into it now but to say, I get it, I think its a misdirected quote, but I get the jist. I believe what people really mean, is you will never know what it feels like to be given something so fragile, that depends so profoundly on your actions. I understand the will do anything for your children that stems from a visceral place and I understand what it feels like to fight when you feel like you have no fight left for someone other than yourself, because if it is only a fraction of what I feel when I see my niece and nephew, it is enough to break you and build you simultaneously. Much of it is stems from a "selfish" place of "I don't want to miss a thing" while the other can't bare to not be there to help them from whatever they need...
So, as I left and re-entered the bathroom many more times, called my doctor and said, "I know you tell me not to call when I am going to be late, but I am going to be very late, so let me know if you can't fit me in..." and the secretary doesn't call me back - I garner what strength I didn't think I could find and I make it there.
When I get there, we determine its time for round 3 in one week of the UV-Blood Irridation - and I can't help it but I start to cry. I just feel so awful and the thought of the treatment, despite knowing I will most likely feel stronger in the long run just seems like too much. So, I focus hard in my mind of the rainy day picture and hugs sent via the air stream, and close my eyes and I do it. I do it for the hope that I feel better for myself, but what pushes me is the hope that my niece and nephew get the aunt that existed before they did.
When I leave the office, I ironically thank my doctor for being so patient - "calmly waiting" as she did, careful with my fragile self - knowing when to push, and use extreme care when the first vein didn't work and she asked me to hold the cotton and I'm so nervous I don't realize that the tourniquet is still on and I hold it and bend my arm - not a good combination to stop blood flow - and she patiently coxes my arm down and holds it herself -tells me to breathe and think of something pleasant - and through a forced smile I did.
Loathing and Longing
I only read one other blog about Chronic Fatigue, Sue Jackson's - not because other's aren't good or insightful - but as I have said before, you can fall down the rabbit hole way to quickly if you start reading too many stories - or at least I can. I really enjoy Sue's blog and a blog that you connect with is like meeting a good friend for the first time - you just click, you don't know why - but you feel connected to this person. It seems that often what I am dealing with or feeling falls serindipitously with something Sue has wrote. And this happened again this weekend.
My family are die hard Marquette University basketball fans. When I was little, we had six season tickets, so most always it was my grandparents and my parents and my aunt and uncle's ritual. On those nights, since my aunt and uncle lived closer to downtown, my sister and I would stay at my cousins where we would all hang out while our parents were at the game. Most times it was pretty uneventful, but put 5 kids together and things happen. The pizza gate incident and the alarm incident both taking place while our parents were at MU games. Pizza gate, in hindsight, was particularly funny, at the time not so much. I'm going off shady details but my Uncle and cousin had gone to pick up pizzas, and they had to wait forever, and there was some confusion - so they left and went elsewhere. So after our parents left for the night, (and i'm not even sure now if it was an MU game) but anyways they left and about an hour later the door bell rings and its a pizza delivery man - and my cousin and I are scrambling for about 40 or 50 bucks - it was a lot of pizzas. There was a frenzy in the house, as we of course think we could go to jail for not paying for the pizzas - not putting two and two together, that these are pizzas from a different place, and we didn't order them, it was a prank - the days when kids actually did punk each other, where some "mean girls" sent pizzas to my cousin's house. I also remember the after math where my intimidating attorney uncle grilled the "mean girls" about what they did, how they scared us, what were they thinking - I'm sure my cousin Kelly must have been mortified - but you don't mess with my Uncle.
Alarm gate was also controlled chaos. My Aunt and Uncle's house had been broken into, after which they got an alarm system. The alarm came with a little remote control that looked like a garage door opener that my Aunt kept on her bedside table. If you thought someone was breaking in, you hit the button and the loudest alarm ever would immediately start blaring. So on this night, our parents called to check in on us from a restaurant and my little sister at the same time hit the garage door looking remote and the alarm begins its deafening blare, and we are all screaming, and some of us crying, and they are yelling at us through the phone to just go downstairs and turn it off! I still am laughing at how crazy we got - my cousin Tom and Katie being the "brave" ones finally got the courage to go downstairs to end the chaos.
Well, that was a side trip down memory lane, anyways it was a huge treat to be able to go to a game when I was little. Marquette games are social events, besides basketball viewing, the half time ritual of heading to the mezzanine and catching up with people you know well and others that you really only see during the long winter months - when the sky is gray and the air is cold - MU gets you out the house -
The last few years have been really good to MU fans, and March Maddness is a highlight. My Uncle, the Commish - has always been the organizer of a pool - very legal I might add - and last year was the first time he wasn't bogged down by a huge binder of everyone's picks b/c we finally went cyber!
This year we were thrilled when we got to the place we are staying that the cable had the Big East network, so we didn't miss a game while we have been gone - and then the icing on the cake was that if Marquette made it to the Sweet Sixteen they were in the West Bracket and would be playing in Phoenix - and they made it!!! So Thursday night was my big outing - I told my doctor I couldn't do anything stressful because I needed to make it to the game that evening - when we got back I went immediately to bed, and like many times before I was laying there at 4pm thinking how am i going to make it to this game - one step at a time - I made it out of bed, into the shower, and then had a big meal so that I wouldn't be hungry - makeup - lipstick - I can do this.
Marc had gone ahead of time and sold our two extra tickets for the previous game. We found parking right in front of the stadium, but when we got in - the chaos started. The Phoenix arena is very deceiving - they built this beautiful entrance around a crappy old stadium. So you walk into an entrance that is slick, shiny and new. It's airy and spacious, and then you keep walking and you enter what felt like a prison to me - Marc had said, do you want to wait out here for a bit - and there was only 20 minutes before the game, so I said no - let's go in - not realizing what I was entering. First the noise - the people taking our tickets are followed by others yelling - "No Re-Entry" "No-Re-Entry" my prison metaphor taking on a whole new meaning - and now there is no normal flow of traffic - there are people entering for the MU/Florida game and disappointed fans leaving from the previous game - we only have two seat sections to get to but we are not moving. Its a hot stale air mosh pit, and my eyes begin darting all over and the noise and commotion are all too much for this fragile nervous system.
When you live such a contained life for so long, this is such a shock to your system. I'm near tears, and I know I can't leave, and I am just looking at everyone else, thinking "does this only bother me?" Surrounded by people and feeling completely alone. Marc gets in line for drinks, and I duck to the nearest gate, walking under the 7 foot cement entrance to the court - and my mind keeps taking it all in - the what ifs...I call my mom, but its too loud to hear, my legs feel weak beneath me and everything is pretty blurry. We make it to our seats, and as my inner dialogue is raging, a piece of home is sitting right in front of us. I was hoping we would see our friends there, but with all the MU fans, found it unlikely, and like a gift, there they are - people I know from home. The ritual of our home stadium is here in Phoenix, and a bit of calmness enters me.
We lost the game. The entire first half I was just focused on the fact that I made it there - and adjusting to the "real world" - the second half I actually was able to enjoy myself - but when we got home I was exhausted. Much of it do to participating in something out of my comfort zone - I have always hated crowds, but it never before would mean the next day I could barely move out of bed. But that's what this illness does, mental and physical stresses both have the ability to wipe you out. Your reserves are gone. And as I tried to get out of bed the next day - one foot in front of the other - there was no denying the effects of the outing the night before -
I thought about the previous night, watching all the people, wondering what else others were dealing with hidden from view. Much like the facade on the stadium, smoke and mirrors, all of us have days when we put on a pretty face, smile, interact, we appear healthy and normal but on the inside there is no running from the worn out, tired narrow cement hallways, that are the true reality.
On Saturday, I read this post - by Sue - and it was comforting to be understood. It's a quick one - take a look - if you read the comment section, there is one in particular - that rings so true, people not understanding the effort you make on a daily basis to be present, to make it to things, etc..something i could so relate to.
Loathing and Longing
My family are die hard Marquette University basketball fans. When I was little, we had six season tickets, so most always it was my grandparents and my parents and my aunt and uncle's ritual. On those nights, since my aunt and uncle lived closer to downtown, my sister and I would stay at my cousins where we would all hang out while our parents were at the game. Most times it was pretty uneventful, but put 5 kids together and things happen. The pizza gate incident and the alarm incident both taking place while our parents were at MU games. Pizza gate, in hindsight, was particularly funny, at the time not so much. I'm going off shady details but my Uncle and cousin had gone to pick up pizzas, and they had to wait forever, and there was some confusion - so they left and went elsewhere. So after our parents left for the night, (and i'm not even sure now if it was an MU game) but anyways they left and about an hour later the door bell rings and its a pizza delivery man - and my cousin and I are scrambling for about 40 or 50 bucks - it was a lot of pizzas. There was a frenzy in the house, as we of course think we could go to jail for not paying for the pizzas - not putting two and two together, that these are pizzas from a different place, and we didn't order them, it was a prank - the days when kids actually did punk each other, where some "mean girls" sent pizzas to my cousin's house. I also remember the after math where my intimidating attorney uncle grilled the "mean girls" about what they did, how they scared us, what were they thinking - I'm sure my cousin Kelly must have been mortified - but you don't mess with my Uncle.
Alarm gate was also controlled chaos. My Aunt and Uncle's house had been broken into, after which they got an alarm system. The alarm came with a little remote control that looked like a garage door opener that my Aunt kept on her bedside table. If you thought someone was breaking in, you hit the button and the loudest alarm ever would immediately start blaring. So on this night, our parents called to check in on us from a restaurant and my little sister at the same time hit the garage door looking remote and the alarm begins its deafening blare, and we are all screaming, and some of us crying, and they are yelling at us through the phone to just go downstairs and turn it off! I still am laughing at how crazy we got - my cousin Tom and Katie being the "brave" ones finally got the courage to go downstairs to end the chaos.
Well, that was a side trip down memory lane, anyways it was a huge treat to be able to go to a game when I was little. Marquette games are social events, besides basketball viewing, the half time ritual of heading to the mezzanine and catching up with people you know well and others that you really only see during the long winter months - when the sky is gray and the air is cold - MU gets you out the house -
The last few years have been really good to MU fans, and March Maddness is a highlight. My Uncle, the Commish - has always been the organizer of a pool - very legal I might add - and last year was the first time he wasn't bogged down by a huge binder of everyone's picks b/c we finally went cyber!
This year we were thrilled when we got to the place we are staying that the cable had the Big East network, so we didn't miss a game while we have been gone - and then the icing on the cake was that if Marquette made it to the Sweet Sixteen they were in the West Bracket and would be playing in Phoenix - and they made it!!! So Thursday night was my big outing - I told my doctor I couldn't do anything stressful because I needed to make it to the game that evening - when we got back I went immediately to bed, and like many times before I was laying there at 4pm thinking how am i going to make it to this game - one step at a time - I made it out of bed, into the shower, and then had a big meal so that I wouldn't be hungry - makeup - lipstick - I can do this.
Marc had gone ahead of time and sold our two extra tickets for the previous game. We found parking right in front of the stadium, but when we got in - the chaos started. The Phoenix arena is very deceiving - they built this beautiful entrance around a crappy old stadium. So you walk into an entrance that is slick, shiny and new. It's airy and spacious, and then you keep walking and you enter what felt like a prison to me - Marc had said, do you want to wait out here for a bit - and there was only 20 minutes before the game, so I said no - let's go in - not realizing what I was entering. First the noise - the people taking our tickets are followed by others yelling - "No Re-Entry" "No-Re-Entry" my prison metaphor taking on a whole new meaning - and now there is no normal flow of traffic - there are people entering for the MU/Florida game and disappointed fans leaving from the previous game - we only have two seat sections to get to but we are not moving. Its a hot stale air mosh pit, and my eyes begin darting all over and the noise and commotion are all too much for this fragile nervous system.
When you live such a contained life for so long, this is such a shock to your system. I'm near tears, and I know I can't leave, and I am just looking at everyone else, thinking "does this only bother me?" Surrounded by people and feeling completely alone. Marc gets in line for drinks, and I duck to the nearest gate, walking under the 7 foot cement entrance to the court - and my mind keeps taking it all in - the what ifs...I call my mom, but its too loud to hear, my legs feel weak beneath me and everything is pretty blurry. We make it to our seats, and as my inner dialogue is raging, a piece of home is sitting right in front of us. I was hoping we would see our friends there, but with all the MU fans, found it unlikely, and like a gift, there they are - people I know from home. The ritual of our home stadium is here in Phoenix, and a bit of calmness enters me.
We lost the game. The entire first half I was just focused on the fact that I made it there - and adjusting to the "real world" - the second half I actually was able to enjoy myself - but when we got home I was exhausted. Much of it do to participating in something out of my comfort zone - I have always hated crowds, but it never before would mean the next day I could barely move out of bed. But that's what this illness does, mental and physical stresses both have the ability to wipe you out. Your reserves are gone. And as I tried to get out of bed the next day - one foot in front of the other - there was no denying the effects of the outing the night before -
I thought about the previous night, watching all the people, wondering what else others were dealing with hidden from view. Much like the facade on the stadium, smoke and mirrors, all of us have days when we put on a pretty face, smile, interact, we appear healthy and normal but on the inside there is no running from the worn out, tired narrow cement hallways, that are the true reality.
On Saturday, I read this post - by Sue - and it was comforting to be understood. It's a quick one - take a look - if you read the comment section, there is one in particular - that rings so true, people not understanding the effort you make on a daily basis to be present, to make it to things, etc..something i could so relate to.
Loathing and Longing
Wednesday, March 21, 2012
A Patient Patient
I am not an early person, most often despite trying my best I am inevitably late. It was quite chronic in my mid twenties, and I was one of those people that my friends literally told me a Christmas Party started an hour before it did - I remember walking into the restaurant with my friend Melanie (who came with me, but didn't know the people throwing the party) and she said, "are you sure we are at the right place?" and sure enough about twenty minutes later everyone started filtering in - i was twenty minutes early by being forty minutes late!
However, this all changes when we are talking about doctor appointments, I hate being late. My doctor just said to me yesterday, "you know, you don't have to call if you are running late, I know you will be here" I am lucky, the longest I have had to wait for an appointment since I have been here is about 45 minutes, and that was one time only. I remember being at Mayo Clinic and that's all you did is go from one waiting area to another. All of us patients duitfully sitting on our chairs, staring straight ahead, waiting for your name to be called. Then you wait in another room while you are waiting for the doctor. Us patients are expected to be patient.
So the other day as I raced to get to my appointment in time, only to wait to be taken, I was curious about the word patient. Turns out it is taken from "suffering" from the Latin 'verb patior' "i am suffering" and the Greek 'paskhein' "to suffer"- I feel like one of those kids from Spellbound - can you use it in a sentence - "I am sick and tired of being a patient patient". Some sites go on to say that as a noun it refers to the "capacity for calm waiting" "someone who suffers their affliction with calmness and composure." Hmm - calmness - not really - composure - I usually put on a pretty good act. It interesting that now many health care facilities use other words such as "client" or "resident" in the case of Nursing Home settings, to "empower" us patients - lets cut through the BS most doctors expect a patient to be just that - I am always patient with my current physician because she deserves that respect - others I have encountered have gotten anything but a calm and composed patient patient - I can thank my grandpa for that genetic trait...
Patient Word Origin
My dad's father George was a notorious impatient patient. After his open heart surgery the surgeon came out and yelled at my dad saying, "your father is the worst patient ever!" He was known to call for a drive by pick up outside of Colomba St. Mary's - my mom remembers clear as day driving on the East side of Milwaukee as George stood there on the street with hospital gown and his coat, spouting the "F" bomb and wanting to get the hell out of that place. Rules. Patients are expected to follow lots of rules. George was never fond of anyone telling him what to do - especially a doctor - as he said - "your paying for them, not the other way around." He couldn't stand the white coat superiority complex that many had, when knowledge was a guarded secret power before the days of the internet.
So I did get lucky where I never had that "doctor as God" complex, and only push back when I have been pushed to my limit. Despite all that, you still won't catch me making doctors wait for me. I know what buttons not to push. I'm not stupid, and I recognize the difficulty of doctors striving to be on time. I'm lucky that my appointments aren't scheduled into 12.5 minutes - like most insurance companies dictate - which is a recipe for disaster. So I sit calmly and composed waiting for my name to be called, because not only do I respect my doctor's time - more importantly I am mindful of the other patient patients like myself, and will not impose on them any further calm waiting than is necessary.
However, this all changes when we are talking about doctor appointments, I hate being late. My doctor just said to me yesterday, "you know, you don't have to call if you are running late, I know you will be here" I am lucky, the longest I have had to wait for an appointment since I have been here is about 45 minutes, and that was one time only. I remember being at Mayo Clinic and that's all you did is go from one waiting area to another. All of us patients duitfully sitting on our chairs, staring straight ahead, waiting for your name to be called. Then you wait in another room while you are waiting for the doctor. Us patients are expected to be patient.
So the other day as I raced to get to my appointment in time, only to wait to be taken, I was curious about the word patient. Turns out it is taken from "suffering" from the Latin 'verb patior' "i am suffering" and the Greek 'paskhein' "to suffer"- I feel like one of those kids from Spellbound - can you use it in a sentence - "I am sick and tired of being a patient patient". Some sites go on to say that as a noun it refers to the "capacity for calm waiting" "someone who suffers their affliction with calmness and composure." Hmm - calmness - not really - composure - I usually put on a pretty good act. It interesting that now many health care facilities use other words such as "client" or "resident" in the case of Nursing Home settings, to "empower" us patients - lets cut through the BS most doctors expect a patient to be just that - I am always patient with my current physician because she deserves that respect - others I have encountered have gotten anything but a calm and composed patient patient - I can thank my grandpa for that genetic trait...
Patient Word Origin
My dad's father George was a notorious impatient patient. After his open heart surgery the surgeon came out and yelled at my dad saying, "your father is the worst patient ever!" He was known to call for a drive by pick up outside of Colomba St. Mary's - my mom remembers clear as day driving on the East side of Milwaukee as George stood there on the street with hospital gown and his coat, spouting the "F" bomb and wanting to get the hell out of that place. Rules. Patients are expected to follow lots of rules. George was never fond of anyone telling him what to do - especially a doctor - as he said - "your paying for them, not the other way around." He couldn't stand the white coat superiority complex that many had, when knowledge was a guarded secret power before the days of the internet.
So I did get lucky where I never had that "doctor as God" complex, and only push back when I have been pushed to my limit. Despite all that, you still won't catch me making doctors wait for me. I know what buttons not to push. I'm not stupid, and I recognize the difficulty of doctors striving to be on time. I'm lucky that my appointments aren't scheduled into 12.5 minutes - like most insurance companies dictate - which is a recipe for disaster. So I sit calmly and composed waiting for my name to be called, because not only do I respect my doctor's time - more importantly I am mindful of the other patient patients like myself, and will not impose on them any further calm waiting than is necessary.
Quick Blurb
I said I was ready for the 30 day push - and yesterday was another first, first time I had two blood treatments back to back. And this morning I feel like I have been beat up - but as the morning has progressed I am feeling a bit lighter - which could be due to my new Clinique Eye Illuminator - even my doctor was surprised - not with the eye illuminator - the two in two days! Last year I only had - if my memory serves - which it probably doesn't - two blood treatments in six weeks - I have had now four in one week.
I said to my doctor yesterday - this treatment is like a bad relationship - you love it and hate it at the same time.
I said to my doctor yesterday - this treatment is like a bad relationship - you love it and hate it at the same time.
Monday, March 19, 2012
Third Time's A Charm...
Its a bit quieter here today. My sister's family headed home, and I will miss the constant random hugs and "i love you heawa" that a 3 year old gives so freely. And little GP with his constant chanting "pa pa daddy" "pa pa daddy". I'm really happy that my parents are here for a few more days, and then its the final 30 day push. And today, we seem to be on track, because I once again had another blood treatment, so I am getting stronger and able to handle more, but handling more also meant a "healing crisis" as they are known, chills, body aches, headache so I am currently in bed - but my mom stayed home from golfing to hang with me -
People often wonder why I don't take Diflucan for the Candida, Antibiotics for the Staph and Strep, and then there is the CMV and EBV elevated titers, I could try some anti-virals - but there are a lot of problems with that - first, it doesn't solve the problem of a dysfunctional immune system. I have read many blogs of individuals on years and years of antibiotics and they still have infections, and then what has that done for their innate immunity but possibly create and antibiotic resistant infection. You can also think of antibiotics as sweeping through your intestines, and the infections can seep into the crevasses of that very long intestinal tract, and therefore they dig deeper into your system - thus only to re-appear later.
My goal is a cure, not a band aid that could also make me worse off than I am now. Tonight my "favorite" medical correspondent Dr. Nancy Snyderman spoke just on that - the World Health Organization's extreme warning of where we are headed if we don't stop the mass overuse of antibiotics. Medicine got themselves into this problem, and I often find that Naturopathic Doctor's face a double standard, people question everything that we do, why why why - yet there is a massive amount of individuals on anti-depressants despite study after study showing that they alone are no better than a placebo. But yet the ND's get the constant scrutiny, and I am a bit tired of it - I am trying to get to the source, and build up an immunity that was destroyed somewhere along the way - perhaps even because of the traditional medical worlds narrow focus on healing.
Once again, don't get me wrong, I believe there are fabulous MD's out there, but the focus of Western Medicine has become so specialized that the chronic illness have gotten lost in a sea of specialists. And I went to them, I went to the Disneyland of Hospitals, the famed Mayo Clinic - but despite their interdisciplinary approach, I hadn't yet seen the endocrinologist, and they focused on my anxiety - anxiety I stated again and again was brought on by the massive weight loss, intolerance of heat and extreme fatigue yet the primary care doc never did a full thyroid panel - setting me back months and months, because I trusted them - I figured I am at the Mayo Bleeping Clinic - if they don't think I have a thyroid problem then who I am to fight this...
So back to the 30 day plunge into the 30 day abyss - I am fighting as hard as I can -letting someone else take control - you lead i will follow - like I said before, poke me prod me ozone me UV light me hydro me - just let me turn the corner - and with all the support I have been getting from my writing - it has lifted me up and I THANK YOU - this has been an eye opening experience - and I have received support and love where I didn't ever see it coming from - I also knew when I started telling people that I was writing that I needed to have thick non judgmental skin, and I feel that I have succeeded. There are areas where I blindly thought support would exist and it has gone silent - but that's okay - its not my need or place to require support anymore. There have been many people the past few years that have seen me and thought I lived a life so different than what I was living, this is where growing up with a heightened awareness of others, anxiety and learning to live with an uncommon illness have shaped me, and has taught me, tread lightly respect others where they are at, not where you wish they would be. And never forget you can always be surprised when you least expect it. I have everything I need from those that I hold so dearly and many more that I hadn't even known existed - I am humbled and blessed - and maybe this was the missing link that will give me the strength to push me to the other side.
"Somewhere Over the Rainbow"
People often wonder why I don't take Diflucan for the Candida, Antibiotics for the Staph and Strep, and then there is the CMV and EBV elevated titers, I could try some anti-virals - but there are a lot of problems with that - first, it doesn't solve the problem of a dysfunctional immune system. I have read many blogs of individuals on years and years of antibiotics and they still have infections, and then what has that done for their innate immunity but possibly create and antibiotic resistant infection. You can also think of antibiotics as sweeping through your intestines, and the infections can seep into the crevasses of that very long intestinal tract, and therefore they dig deeper into your system - thus only to re-appear later.
My goal is a cure, not a band aid that could also make me worse off than I am now. Tonight my "favorite" medical correspondent Dr. Nancy Snyderman spoke just on that - the World Health Organization's extreme warning of where we are headed if we don't stop the mass overuse of antibiotics. Medicine got themselves into this problem, and I often find that Naturopathic Doctor's face a double standard, people question everything that we do, why why why - yet there is a massive amount of individuals on anti-depressants despite study after study showing that they alone are no better than a placebo. But yet the ND's get the constant scrutiny, and I am a bit tired of it - I am trying to get to the source, and build up an immunity that was destroyed somewhere along the way - perhaps even because of the traditional medical worlds narrow focus on healing.
Once again, don't get me wrong, I believe there are fabulous MD's out there, but the focus of Western Medicine has become so specialized that the chronic illness have gotten lost in a sea of specialists. And I went to them, I went to the Disneyland of Hospitals, the famed Mayo Clinic - but despite their interdisciplinary approach, I hadn't yet seen the endocrinologist, and they focused on my anxiety - anxiety I stated again and again was brought on by the massive weight loss, intolerance of heat and extreme fatigue yet the primary care doc never did a full thyroid panel - setting me back months and months, because I trusted them - I figured I am at the Mayo Bleeping Clinic - if they don't think I have a thyroid problem then who I am to fight this...
So back to the 30 day plunge into the 30 day abyss - I am fighting as hard as I can -letting someone else take control - you lead i will follow - like I said before, poke me prod me ozone me UV light me hydro me - just let me turn the corner - and with all the support I have been getting from my writing - it has lifted me up and I THANK YOU - this has been an eye opening experience - and I have received support and love where I didn't ever see it coming from - I also knew when I started telling people that I was writing that I needed to have thick non judgmental skin, and I feel that I have succeeded. There are areas where I blindly thought support would exist and it has gone silent - but that's okay - its not my need or place to require support anymore. There have been many people the past few years that have seen me and thought I lived a life so different than what I was living, this is where growing up with a heightened awareness of others, anxiety and learning to live with an uncommon illness have shaped me, and has taught me, tread lightly respect others where they are at, not where you wish they would be. And never forget you can always be surprised when you least expect it. I have everything I need from those that I hold so dearly and many more that I hadn't even known existed - I am humbled and blessed - and maybe this was the missing link that will give me the strength to push me to the other side.
"Somewhere Over the Rainbow"
Dreams Come True
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