Thursday, December 29, 2011

Research First

I found this after site after being on Laura Hillenbrand's facebook page, and as I started to read it got so overwhelmed.  Thinking of all this information I would like to add, questions I had, making sure research isn't like I have said previously constantly looking for the "magic bullet" - but you see that is how medicine is - and I truly believe that this narrow view that we have taken to explore our human body doesn't always fit the map they are using to decode it.  I am convinced, much like let's say autism, it is closer to a tipping point theory. To be quite honest, I my head is so foggy today, I can't seem to articulate what I want to say, but this website is a wealth of information - so I wanted to include it asap.

Saturday, December 24, 2011

Make the Best of Your Situation

Whining.  My three year old niece recently discovered its merits.  And while I was getting ready for this afternoon, and procrastinating making muffins, I felt like I sure am doing a bit too much whining.  I don't mean to be, and I certainly don't feel like it makes things much better, so I hope I haven't been misunderstood.  As I looked back at my posts, they are often on the bad days, and that isn't quite by design.  Its more out of a desire to try to give insight to something that if I didn't experience myself I truly do not know if I would understand.

Not too long ago I was reading a short blurb about the author Laura Hillenbrand and though she rarely speaks of her chronic fatigue, rather focusing on writing about other's struggles, she was describing her situation.  In one article she described her bedroom where she keeps a mini refrig so that if she can't get downstairs she has what she needs by her bed.  And me, me of all people, actually thought to myself - seriously!  And I couldn't believe myself, how could I not comprehend that?  In an article Ms. Hillenbrand had published for the New Yorker where she shares her journey of chronic fatigue she also dismissed any forms of "alternative" therapies after having a bad experience with one practitioner.  That time again, I found myself ready google Ms. Hillenbrand's address and say, have you tried hydrotherapy, nutrient IV's, testing your blood levels for staph or strep?  Have you had your parathyroid levels tested?  How about blood photopheris?  And I caught myself, Laura Hillenbrand, New York Times Best Selling author, is obviously a smart woman.  She has managed to write two novels, in spite of this illness.  And I get it, I see someone, whom I believe is "worse" off than myself - which is somewhat ironic considering her success.  And even I living with this have that knee jerk reaction to find her a solution.

This is why I "whine".  Because I know how hard it must be for someone outside looking in to understand this enigma of an illness, considering most days I don't even get it myself.  And although, I do try as someone said in a facebook post today, quite well, that remember the holidays are difficult for many, so make the best out of your situation, it made me pause, I hope those reading understand that I do most days the best I can -

The first is Laura's article from the New Yorker magazine, the second an eye opening interview for USA Today.  In it she states, I have an illness that I can not defeat - here is where we differ, but I understand, empathize, and respect the choices she has made to learn to live with this illness.  But Laura, if you care to chat...I know, I know.  So, I couldn't resist, I posted info on her Facebook page and a comment page on her Unbroken page.

Getting Through...

It's a phrase you hear a lot of this time of year, "getting through the holidays" - it means different things to different people.  Last night as I was lying in bed that phrase kept going through my head like a needle stuck in a record player, skipping and skipping, again and again. How my life has changed over the past years, it has been a subtle shift that has slowly become an unwanted mantra that I hadn't fully comprehended I had adopted - "just get through...fill in the blank..."

This entire holiday season I have had one goal, one finish line - make it through Christmas Eve and Christmas.  This has meant missing many other scheduled events that in years past I would have been flitting from one thing to the next.  Christmas parties, children's plays, and even shopping which the majority has been done online.  At the beginning of the week my mom and I had planned to go to a particular boutique for me to get some pants, three days in a row the energy just wasn't there.  Then finally on Thursday it was a reprieve from the envelope of fatigue that had set in.  On Wednesday night, I had not been able to make a dinner out with a few friends, my thoughtful friend Sue when sending me the message noted, just even try for a quick stop in.  My return message was "if there is a word out there that means more tired, than tired, that is how I feel"  Its been a long time since that type of fatigue set in, as you are lying in bed and you literally can not move even your pinky finger and this disbelief goes through your mind.  How is it possible to feel this fatigued from doing nothing?  But like I said, Thursday was a welcome hiatus, but then Friday came with a bang.  It just wouldn't give.  And in my mind, I am thinking, really? Its the day before Christmas Eve, all the "preparation" and here I am at 2pm staring out the window in bed.  I am disgusted, because the sun is shining, and at the end of December in Wisconsin, the window of sun is at a minimum.  I tell myself, if you close your eyes now, you will wake up to darkness - and to be honest , I don't want to wake up to darkness.  But I can't fight it, I can barely move positions despite my hip joint being sore from laying on my side.  I force up at 6 pm, and think - just dinner and then bed.  Two tasks, dinner, bed, dinner, bed, dinner and bed.

Back in bed, my eyes heavily closed, I am transported back to the Christmas's of my childhood, I remember my sister, always the early riser, pulling me out of bed.  She's five years younger, and has always been a morning person - me not so much.  I would plea for another five minutes of sleep, partly because I was tired, but also because I knew once we went downstairs the anticipation was over and I wanted to hold onto Christmas Eve for a few more minutes.  I have always been extremely lucky to never have been disappointed from Santa.  And as I lay in bed last night, feeling like someone had shackled invisible weights on my arms and legs, I ached for that excitement of the day.  Not just Christmas, but year round.

In my "previous" life, I never tried to "get through" something, unless it was something you needed to, like the dentist, or a funeral.  But it all seemed crystal clear, that has been what this chronic condition has turned me into, someone who "gets through" even the fun stuff.  I have always loved weddings, and birthdays, parades, not so much - any get reason to get together with friends or go out for drinks.  Now all those wonderful events have been lumped together as something to get through.

Its a shift in thinking I hadn't even consciously been aware of that I was doing.  I know the holidays for many individuals seems to magnify both the good and the bad in our lives.  People out there, try to get through the heartache of missing loved ones, financial hardships, or perhaps being alone, while you see images of others that are not.  This year, though it may not be the last of getting through, the holidays, I hope it marks the end of getting through the day. 

I leave for Phoenix January 10th and I feel like I am doubling down in Vegas.  Throwing all my hope, all my chips in one basket - that this works.  To anyone out there, getting through - I am trying myself to stop that mindset, and practice accepting where I am at, because while getting through works, second by second, minute by minute, hour by hour or day to day - its sure not as Merry. 

Thursday, December 15, 2011

Well Said found this article very interesting, wanted to post it after the "blood treatment" - it shows the constant controversy of what the illness actually even is - my treatments are aimed at killing the high levels of staph and strep and candida in my blood.  The treatment acts like a massive antibiotic, it wakes up the body to what clean healthy blood is like, many new articles are adding an autoimmune component, and that would explain the syndrome like quality of this illness, not everyone is equal.

Wednesday, December 14, 2011

This is the "Blood Treatment" I have referred to

Ultraviolet Blood Irradiation or Photoluminescence Therapy
Written by Cheryl M. Deroin, NMD
The wavelength of light used in photoluminescence treatments, wavelength C, corresponds to the wavelength of light from the sun that is known for its healing properties.  Dr. Gurwitsch, who researched photo-biology in the 1930’s, demonstrated that body tissues gave off tiny emanations of light in different wavelengths, all in the ultraviolet spectrum.  It has also been found that the blood of people who suffer from chronic disease such as cancer, diabetes and arthritis give off much more light than the blood of healthy people.  However, those who are sick have an internal deficiency of ultraviolet light.  The cells of those who are chronically ill are not able to transmit their synthesized light inward due to cellular disturbances.

Ultraviolet light has been used in this country since the 1930’s, and in other countries much longer to combat bloodstream infection.  The benefits are much greater than the simple destruction of bacteria, viruses and other foreign substances.  Because only 200 ml of blood are taken out and passed through the UV light, about 1/25th of the body’s supply of blood, there is no direct destruction of foreign substances, but rather it is the effect of the light in the chemical energies of all cells which creates the strong response in the body.

Photoluminescence corrects cellular imbalance in the blood.  One such method of correction is the normalization of white blood cells, whereby high levels will decrease and low levels will increase.  Ultraviolet blood irradiation (UBI) tends to build red blood cells in cases of anemia.  It also enhances the removal of fat from the liver, which if left untreated can cause elevated triglycerides and cholesterol.  UBI can increase cell permeability and is very effective in stimulating the immune system by enhancing the body’s own ability to produce antibodies.

One of the most significant aspects of UBI is that it increases oxygen levels in the blood.  Oxygen deficiency blocks the basic physiological oxidation processes in the body which can cause fermentation of sugars leading to abnormal cell growth and blockages in the vessels.  Research done as early as 1925 demonstrated the increase in venous blood oxygen levels after photoluminescence that accumulates in the body with repeated treatments.

Check Mate

The only time I ever attempted to play chess, I was being taught by a second grader.  It was my freshman year at the University of CO at Boulder and I volunteered at a grade school just off campus.  It was a progressive charter school, the teachers names were Penny and Polly - there was a lot of free play.  I distinctly remember little blonde haired Jake patiently trying to tell my the rules of chess.  I even resorted to pulling out the "instructions" from the game box - after many attempts, we switched games.

But like most non chess players, I get the gist.  It requires patience, and mapping out a plan, but I have also seen it in the movies, that one wrong move, after hours of play, and the other players eyes light up, they take their time and then hop hop hop they jump all over you and yell check mate.

That's a bit how I have felt over the past few weeks.  Phoenix was a huge leap and bound of improvements.  I was patient, and I was a patient.  I stuck to a monotonous day, breakfast, lunch, doctor, home, dinner, bed.  I didn't see some of my friends there, I just didn't have any room for any other energy than the task at hand.  When I returned to Milwaukee, I was rewarded with many good days.  I ran into a friend of mine and she couldn't believe how good I looked.  She couldn't pin point it, your eyes are brighter, your skin looks great, just overall whatever they did to you its a noticeable difference.  And that 's how I felt - just lighter.  One of my favorite days was taking my niece to the grocery store - so simple.  But its what I always thought it would be like having a niece or nephew, just chilling.  She came over, we played, got in the car, she helped me grab all the items, checked out, it felt more like a scene from Mary Poppins - were the birds singing to us - felt like it. 

So after being back, a few bad days slipped in here and there - that's okay, to be expected.  Then the cold that was circulating made it to me, again - did I really think I would go all winter without a cold? I managed to deal with it, with only a daily dose of Pulmacort, as a preventative measure for my reactive airway disease - but I didn't need to be breathing in and out of the nebulizer - progress.  I was being patient, of course I was hosting my virus longer than others, but I was managing. 

This past Friday night I felt good enough to head to my alma mater high school to watch my friend's first grade daughter perform in the half time show.  I felt like yelling "I'm on top of the world" you can't imagine how great it feels to effortlessly do daily tasks.  I observed the students all decked out in their pajamas - something we would have thought of 20 years ago.  I crammed into the bleacher seats, and despite it being hot, it didn't make me feel faint - nothing a t-shirt and water couldn't calm.  And after, Steph and I headed out for a drink.  I was winning this game of chess.  I haven't had any alcohol in at least 6 months, but oh that Sierra Nevada sounded so good.  I haven't drank hard alcohol in years, wine often left me feeling congested, and beer with the yeast never seemed that good of an idea.  But I was stronger now...

Hop, hop, hop - check mate.  When I woke up the next morning with hives all around my neck like an ugly red turtleneck.  They were inflamed, itched, my cough was back and its like I fell down the rabbit hole.  One wrong move, that blissful beer - and five days later I am still paying for it.  The rash has come and gone, the cold simmered up, the fatigue increased.  Much like chess its been a mental game trying to stay positive - its like they say, the higher you go the further you fall.  So that's the good news, I am not used to feeling so good, so this tumble seems magnified.  I know its not, but its overwhelming, to map out and plan every move so carefully gets exhausting, on an occasion I want to forget about it and just go with the moment.  Not analyze every decision of every day like I am playing Bobby Fischer - but it seems as soon as I the opponent against this myriad of symptoms take a break, all the time, all the planning, in one second can come crashing down.

So, its off to a new board.  Start where I am at - rashy, uncomfortable, dealing with acute illnesses on top of the chronic, and a new adjusted plan.  My original one was to go back to Phoenix in February, but I got that glimpse of not exactly my "previous" self, but close enough, that waiting here all January seems like I am just wasting time, that I cant' bear to waste.  So, Jan 10th, I am off again, and despite knowing that I am going to be homesick, I am tired of watching on the sidelines, and hoping that more treatments, more time, my well self will stick around a bit longer.

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