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.
Wednesday, March 21, 2012
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
Friday, March 16, 2012
Double Trouble
It happens, just as I feel I really cannot mentally gear up for another day with this illness, just when I want to scream give me a few days of normal - please - just when all that is crashing down - I get hope. This week - despite having my period - which really knocks us CFS'ers down - I was strong enough for two blood treatments, one on Tuesday and one Today. It took me completely by surprise - and my normally very prepared self - plenty of fluids, a dense protein meal - mentally gearing up - I did none of that - and I was able to handle them. Tuesday was a breeze - twenty minutes - bing bang boom - Today, oddly I was not hungry for lunch - so I went to the doctor with a sandwich in hand - but hadn't eaten since breakfast - and for the first time in a long time when she said - you can handle it - I didn't self doubt. So despite not having any of my normal precautions in hand, and despite by blood being thick and black (most likely due to bacterial and viral die off) so what took 20 minutes Tuesday took over an hour today - but I wasn't light headed - I didn't need to drink sugary beverages, and I felt a sense of calm I haven't in a long time. Progress. There was no doubt I am stronger.
Part of it was I don't care anymore, poke me - prod me - ozone me - IV me - hydro me - color puncture me - I don't give a damn what you do to me - just make me better. This optimism may fade, and that's why I intend to have it in writing - but today - one hour ago - I didn't have to force hope - i believed - I will get better. I will get better. I will get better - and maybe in part because I have just had enough.
Part of it was I don't care anymore, poke me - prod me - ozone me - IV me - hydro me - color puncture me - I don't give a damn what you do to me - just make me better. This optimism may fade, and that's why I intend to have it in writing - but today - one hour ago - I didn't have to force hope - i believed - I will get better. I will get better. I will get better - and maybe in part because I have just had enough.
Tuesday, March 13, 2012
Uncommonly Kind
I've had a really bad sore throat all weekend, and today when I went into the doctor my lymph nodes in my neck are really swollen - perhaps they have moved down from sub-mandibular (under the jaw) area and down my neck - fine with me they can keep on walking right on out of here!
My family has been in town, my sister, her two children and my parents. Plus this weekend my Uncle who lives in California came for a quick visit. For some odd reason having all my family here has made me homesick - which seems strange. I guess all these reminders of home make me miss my actual home. Not that I should complain, since where we are staying is so gorgeous - but its not home. And as much as I like to pretend that I am a very young snowbird, that's not the case. Addison has decorated my walls with a few of the pictures she found that I had in my drawer next to the bed, so now on the wall and glass door hold random 4x6 snapshots. I also had my mom bring me my sheets and duvet cover from home on her last visit - which each night I am grateful for.
Also - having everyone here, has made me acutely aware of how little I can do - when its just me and Marc here, we get into our monotonous routine - breakfast - lunch - drive to Dr. - drive home - rest - maybe swim or short walk - dinner - tv - bed - wake up and do it all over again. But the hustle and bustle of a 3 1/2 year old and a 1 1/2 year old on a vacation has stirred the pot. And as much as I love it, its frustrating to half participate. There are many brights sides, one being the good night routine with Addi - we watch a bit of a movie, then stories - and her unknowingly kindness she freely gives can break one's heart. For example, yesterday when I got back from the doctor she was having a party in my room - and when I said my throat was really bothering me - she came over and kissed my neck - and then went about stirring up her colander of soup for the party - complete with ripped kleenex and my iPod headsets as the ingredients - if kisses from a three year old could wipe out this illness - I would be currently cured.
Kindness. That little kiss - or out of the blue - I love you - or hug from a not too steady 1 1/2 year old make me yearn to be better before they realize one of these aunts is not like the other...that most adults don't spend the majority of day in bed...but for now they don't notice a thing - but I do.
Last week, I opened up my Facebook page and there was the following message -
...you are awesome! you are so sweet and always recognize and notice everybody! yep, you are officially going to heaven!"
I can't tell you how it made my day, and also made me a bit confused, because Sophia, who left the message and I though we went to high school together, same homeroom, she is not someone that I have regular contact with - and when I commented that I don't know what I did, but I will take it - she replied
"It shouldn't be unexpected...I think I speak for everybody! Yep, I'm the spokesperson" -
Kindness - it goes a long way - and the days like today - when I can't seem to concentrate well - the words i want to say aren't coming freely - my neck has hives - my eye lids are rashy - and I would really rather have gone to Nordstrom with the gang than be in bed and I begin to wonder besides being extremely high maintenance what the "f" am i doing that really matters anymore...then I force myself to be grateful, to focus on that unexplained message - that doing "something" isn't something monumental - this illness has forced me to re-evaluate my definition of being accomplished - and that simple Facebook message meant more than the author could have known - because it reminded me again of the power of kindness - and if i can accomplish that - that is enough. It took an unsolicited message to wake me up again - so thank you.
A friend of mine has started a website and Facebook page dedicated to just that - random acts of kindness - I encourage you to join it - Uncommonly Kind - there are wonderful stories - and this is one I will add -
My family has been in town, my sister, her two children and my parents. Plus this weekend my Uncle who lives in California came for a quick visit. For some odd reason having all my family here has made me homesick - which seems strange. I guess all these reminders of home make me miss my actual home. Not that I should complain, since where we are staying is so gorgeous - but its not home. And as much as I like to pretend that I am a very young snowbird, that's not the case. Addison has decorated my walls with a few of the pictures she found that I had in my drawer next to the bed, so now on the wall and glass door hold random 4x6 snapshots. I also had my mom bring me my sheets and duvet cover from home on her last visit - which each night I am grateful for.
Also - having everyone here, has made me acutely aware of how little I can do - when its just me and Marc here, we get into our monotonous routine - breakfast - lunch - drive to Dr. - drive home - rest - maybe swim or short walk - dinner - tv - bed - wake up and do it all over again. But the hustle and bustle of a 3 1/2 year old and a 1 1/2 year old on a vacation has stirred the pot. And as much as I love it, its frustrating to half participate. There are many brights sides, one being the good night routine with Addi - we watch a bit of a movie, then stories - and her unknowingly kindness she freely gives can break one's heart. For example, yesterday when I got back from the doctor she was having a party in my room - and when I said my throat was really bothering me - she came over and kissed my neck - and then went about stirring up her colander of soup for the party - complete with ripped kleenex and my iPod headsets as the ingredients - if kisses from a three year old could wipe out this illness - I would be currently cured.
Kindness. That little kiss - or out of the blue - I love you - or hug from a not too steady 1 1/2 year old make me yearn to be better before they realize one of these aunts is not like the other...that most adults don't spend the majority of day in bed...but for now they don't notice a thing - but I do.
Last week, I opened up my Facebook page and there was the following message -
...you are awesome! you are so sweet and always recognize and notice everybody! yep, you are officially going to heaven!"
I can't tell you how it made my day, and also made me a bit confused, because Sophia, who left the message and I though we went to high school together, same homeroom, she is not someone that I have regular contact with - and when I commented that I don't know what I did, but I will take it - she replied
"It shouldn't be unexpected...I think I speak for everybody! Yep, I'm the spokesperson" -
Kindness - it goes a long way - and the days like today - when I can't seem to concentrate well - the words i want to say aren't coming freely - my neck has hives - my eye lids are rashy - and I would really rather have gone to Nordstrom with the gang than be in bed and I begin to wonder besides being extremely high maintenance what the "f" am i doing that really matters anymore...then I force myself to be grateful, to focus on that unexplained message - that doing "something" isn't something monumental - this illness has forced me to re-evaluate my definition of being accomplished - and that simple Facebook message meant more than the author could have known - because it reminded me again of the power of kindness - and if i can accomplish that - that is enough. It took an unsolicited message to wake me up again - so thank you.
A friend of mine has started a website and Facebook page dedicated to just that - random acts of kindness - I encourage you to join it - Uncommonly Kind - there are wonderful stories - and this is one I will add -
Thursday, March 8, 2012
Hydrotherapy
I often mention "hydrotherapy" - so here are the instructions for Constitutional Hydrotherapy -
Constitutional Hydrotherapy
Constitutional Hydrotherapy
Wednesday, March 7, 2012
The D's
Doubt, Despair, Dependent - that's how i have felt the past 48 hours - I normally have a few bad hours, and then a little break, like the light shining through a bunch of storm clouds. But the last 48 hours the word fatigue doesn't even describe it - I don't know what dying feels like, and perhaps there are many experiences of that inevitable fate, but as I was laying in bed - I kept thinking, I feel as if I am slowly dying - For the firs time since I got here I didn't think I would be able to get to my appointments - but the knowledge that I may feel better afterwards willed me into the car. When I got to my appointment my doctor realized that I had a fever - and that was HUGE! I never get a fever, never ever ever - I don't sweat either - both signals of a dysfunctional immune system. This means progress - I'll take progress -
Last night while I was getting my hydrotherapy treatment a song came on the radio - and I'm not even sure if it was Dolly Parton - but her wide smile came into my head - and I thought to myself - a world where Dolly Parton exists is a world filled with hope - if Dolly can pull herself out of a shack in the Blue Ridge Mountains - then there has to be a way that I can find a way out of this - despite this illness not obeying the rules - because often the harder you try the worse you get - but there has to be a way back to my old self - so I have another D to end the day - a bright face of hope - thanks Dolly!
And today - the fog has lifted - my back pain has lessened the fever is gone and the best news yet is in about 1 hour my family will be here - lucky.
Last night while I was getting my hydrotherapy treatment a song came on the radio - and I'm not even sure if it was Dolly Parton - but her wide smile came into my head - and I thought to myself - a world where Dolly Parton exists is a world filled with hope - if Dolly can pull herself out of a shack in the Blue Ridge Mountains - then there has to be a way that I can find a way out of this - despite this illness not obeying the rules - because often the harder you try the worse you get - but there has to be a way back to my old self - so I have another D to end the day - a bright face of hope - thanks Dolly!
And today - the fog has lifted - my back pain has lessened the fever is gone and the best news yet is in about 1 hour my family will be here - lucky.
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