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.

Sunday, November 6, 2011


We were all set to head on out of Phoenix yesterday....then things changed.  Mainly, my boyfriend got a hole in one at a charity event here which qualified him for next week Sunday's million dollar chance.  Secondly, Sophie has been battling either pancreatitis of other complications from a IBS flare up, so has spent two days at the vet with IV fluids and pain meds.  So, when the hole in one went down, coupled with Sophie's less than stellar health, a generous offer from friends to stay at their condo for free - add it up and we're now her until next week Tuesday.

I was a bit unsure of the decision, homesickness setting in, tired of doctor appointments but all evidence from the universe seemed to be pointing in the direction of staying put.  My cousin had posted a funny message on Facebook regarding a heart email being sent to her 11 year old son.  So I had messaged her, wondering if she had gotten the monkey Andrea Z off her back, or had she shown up under his window holding an ipod overhead!   She laughed and appreciated the John Cusack reference.  So after getting her message, I was in a John Cusack movie mood, wishing for Serendipity, and low and behold - I turn on the E channel at 8:59 pm, and no joke 9pm - wait for it, drum roll, Serendipity was starting at 9!

Hoping this extra week, is serendipitous all the way around!

Friday, November 4, 2011

Be Fancy

When all else fails, be fancy.  I'm heading out of Phoenix tomorrow, have last treatment today until February.  Ran into a woman in the clinic who I had met last February, it was so good to see her, I had been worried about her, but didn't want to ask about her prognosis.  I felt so sick sitting in the waiting room, and she came out, and was equally happy to see me - she has an inoperable tumor of the tonsil, looking at her you would never know.  Her and her husband have re-located from Pennsylvania and are living with their daughter here in Phoenix.  Her options for traditional care were bleak, some doctors said they couldn't touch the tumor, others said they could with removing part of her jaw.  She didn't know it - but her smile lifted my spirits.  She talked about how difficult it is to choose care that is against traditional medical advice, and that you often don't get the same amount of empathy when you take a different road.    I know what she means, when you take the path that hasn't been illuminated yet, you get a lot of opinions, that you would you be better, if you just went to the "mainstream" approach.  I have tried that approach, and they have no answers.  I know a lot of the "criticism" comes from love displaced as fear, but sometimes you feel you are fighting two battles.  I don't try to convince people anymore of why I am doing the treatments I am, I have done all the research, all the options, and can only do what I think is best at this time.

The woman and I bonded over jewelry, she commented on my rings.  And I had to smile, because its my little mantra inside, when all else fails, doesn't hurt to be fancy!

Thursday, October 27, 2011


I have always loved the water - this summer my trips to Western Racquet Club, lifted my spirits in more ways than one.  First, when I swim, I feel free.  I don't hurt, I don't feel the like I am trudging through mud as I often do walking.  My hope was to get up to 25 laps, (one being one length of the pool) - I didn't make it, but I tried.  For awhile most doctors recommended a graduated exercise program for chronic fatigue patients, so for example you might begin with as little as one minute of walking, do that for a few days, then add a few more minutes and continue carefully taking baby steps of incremental increases.  However, now what has been found is each individual should find you own personal maximum exercise tolerance.  I have found this the better approach, although frustrating, it seems to be the best way to get maximum good days.  Too often with the graduated program, you push yourself too far, and then do the typical phrase two steps forward, but ten steps back.  So for walking I am grateful to have the beautiful Elm Grove park that now has walking paths.  There are two paths, a small circle and a large one around a pond.  On good days I can do one large loop, on marginal days the small loop.  But swimming, I was hoping that I could once again try the graduated program.  There is something about the water that I believe helps more efficiently stimulate your lymph system, and have lesser side effects than walking or biking, etc..  The beginning of the summer, I started slow, and on some days I would drag out of the house at 7:40, knowing the pool closed at 8pm - but that was okay, because I could get in and it only takes about 3 minutes to do 2 laps!  I swam as long as the humidity was too high, and I really thought I would be able to get up to that magic number of 25 - I got to 15.

The other wonderful aspect of swimming this summer was the social aspect it provided.  I repeat, I am very blessed in many ways, and I have numerous friends since grade school that have returned to Elm Grove, and while we "suffered" at the small public pool, they have been lucky enough to join WRC.  One of the most frustrating aspects for a social person with this illness is the isolation it often imposes.  Its extremely difficult to make any advance plans, and now with so many friends having families, spontaneity is not the easiest of tasks.  Thus the club offered me a way to see friends and acquaintances without making plans to do so.  I also loved bringing my best friend and her family, watching the kids advance to jumping off the high dive this year! 

Swimming has always brought me a bit of peace, and what made me think of this tonight was a report on the CBS nightly news.  A young woman who is paralyzed noticed after she was scuba diving, she had some feeling on her legs.  She was able to convince some open minded neurologists at John Hopkins to take others that were paralyzed and measure their sensory responses before and after scubaing at specific depths.  What they found was amazing, individuals markers improved, not only immediately after scuba diving, but the effects lasted about 30 days.  What the research is looking at are the increased levels of nitric oxide that the body produces while diving.  They believe this then increases serotonin levels and which find a back door route to stimulate the nerves in the spinal cord.  Fascinating!  The reason this sparked my interest even more is because today I was extremely nervous to get my "blood" treatment as I call it, and was working on a post that I didn't complete before I left.  I was second guessing my treatments again because they are out of the norm, and now as I lay in bed resting from the treatment, seeing the scuba piece made me smile and once again gave me hope.  It proves what I already know in the truth of my heart, just because everyone isn't doing it, doesn't mean it won't work.

The woman who first discovered this phenomenon on herself, while she is convinced she will walk again, she also felt much pride in her persistence and sharing her story that research may come out to help so many others.   I have always found the hope of those paralyzed a group unwavering in their determination to walk again, or find amazing ways to re-capture the joy of movement any way they can, thus they inspire me once again tonight. 

Tuesday, October 18, 2011


Today I did what I haven't done in awhile, I sought out another opinion/doctor.  Here's where it gets a bit complicated - I am being treated by a naturopathic doctor in Phoenix, and I currently live in Wisconsin.  First, since I too am an ND, I actually dread the term, "naturopathic" doctor - it seems to qualify the care I am getting.  There are often two camps - the one that feels this is a brilliant choice, and the others who think I must be crazy, and also this is why I must still be sick, b/c I don't see a "real" doctor. 

I remember the exact day I first developed symptoms of some sort of illness.  I don't remember the date, nor what I was wearing - but I remember the exact moment that I realized something was very wrong.  It was I believe in my third year in Phoenix, I had moved there to attend Southwest College of Naturopathic Medicine, and despite dreading the heat the move to Portland or Seattle seemed too far away, thus I chose the school in Phoenix for its direct 3 and 1/2 hour flight.  My friend Sandy and I had started walking together.  We had been doing the "Biltmore Loop" which is a circle in Scottsdale with all these crazy huge homes next to the resort for a few months.  There is also a canal next to the circle, and we had started adding that in to our walks too.  I at the time appeared in great shape, I was 5'7" and 120 lbs, despite never being some all star athlete, in my mid twenties I was a regular at the gym - at my best I could run seven miles, or bike for an hour and then do a thirty minute swim.  I entered school at age 28 and with the demands of the program had gotten off a regular routine.  I remember when I was in such good shape thinking to myself, "how do people consider walking exercise? I could walk for days" I would soon feel otherwise.

Anyways, this loop including the canal was no more than 2 miles.  I really didn't like walking the canal as much, and didn't know why.  Like I said, I don't remember the date, and at the time I really didn't understand the significance, but Sandy and I had been walking and I began to notice that I was so exhausted when we were done.  I didn't want to mention it to her because it seemed so ridiculous, I would get in my car, and just sit there and tell myself a million excuses why I was so tired.  But on this specific day, we had reached the end of the canal, and I looked at her and said Sandy, I don't know if I can walk back - I am exhausted, I feel weak and my calfs are killing me.  That was the beginning, I just didn't know it yet.  Like most CFS patients, I looked for all the reasons that a otherwise healthy 31ish year old would be exhausted from a stroll.  It took me back in my memory to when I was eleven, and my mom, best friend Kim and I were at the State Fair (which I despised), I could barely walk through the Fair, and the next day was the exhibition Packer game, and that time I remember exactly what I was wearing - gray bermuda shorts, and a forest green ralph lauren sweater with a bright pink polo, it was a new outfit my mom had gotten me for not feeling well and a soon to be back to school clothes.  The stairway to our seats and Milwaukee County Stadium felt like Everest - that Monday, I was diagnosed with mono.  This canal walk felt like Everest all over again, however this time, 6 weeks of bed rest wasn't going to do the trick.

The doctor appointment today emotionally drained me, it brought me back to the beginning of this journey, where I searched and searched and searched for the magic pill - the gold at the end of the rainbow, the perfect doctor, with all the answers.  However, this time, I wasn't searching for the Golden Ticket, I just need some support here in Wisconsin, so I don't feel like a fish flailing in the ocean when I am not in Arizona.  He's an MD that has gone to the other side so to speak, and is quite the smarty pants, Yale undergrad, which I was going to make a joke when the diploma on the wall, all in Latin says "Yaleness" or something like that - but didn't think he would find it funny- but it kind of is, using Yale as an adjective - and then John Hopkins for Med School.  Tired of not getting people better, he's like a kid on their first halloween, he's so excited with all the possibilites that go with "alternative" "complementary" etc.. approaches, and he is humble enough to work with my ND in Arizona.  So while I gave any doctor a difficult task, to "kind of" be their patient, he appears kind enough, open minded enough, to possibly fit the bill.  And besides, one of his clocks said 2pm, the other 9:30, when it was actually three o'clock, so yaleness and hopkiness aside, there was something about that observation that made me feel like he was my kind of guy.

Despite it being an extremely positive experience, I left feeling overwhelmed - perhaps that's why its one in the morning and my head is spinning, and I can't sleep - its hard not to constantly question your decisions and he had lots of solutions that a first year ND student has, vitamin D, lots of it, Fish Oil, tumeric, all that exuberance left me a bit deflated, b/c if it was as easy as taking a gallons of Vitamin D and Fish Oil, the treatments I learned about 10 years ago, don't you think I would have swallowed that pill.

Leaving for Phoenix on Saturday - fingers crossed.

Sunday, October 16, 2011


Its often said that you don't find a dog, a dog finds you.  Sophie came into my life about 7 years ago and even as I drove home with her I swore I would never be one of those crazy dog people.  The one's that the dog adorns their holiday cards, the dog they can't leave for more than 24 hours, the one with special food and sleeps on your bed, well I not only became one of them, I think they abducted me and named me their leader.

My first experience with a family dog was my grandma's dog Bonnie.  Bonnie was a purchase my father made in hopes of staving off a divorce between his parents.  I am not sure where that logic came from, but it worked.  Bonnie was the love of my grandma's life, most grandchildren were often called by her name.  She even had one of those professional studio portraits in a fancy frame, where its hard to tell if its a photograph or a painting.  I inherited a number of my grandma's genetic influences, the strongest perhaps is the adoring love she had and I have for our dogs.

When I was little, my sister and I begged for a dog.  For years and years, and my mother's main reason against - at least the one that she vocalized - was that dog's die and it is really sad when they do.  So when we finally got our Wheaton Terrier Hennessey when I was in middle school, I distinctly remember always being well aware that this dog's time on earth was limited, and I better find a way to get use to it.  In fact, she did almost die numerous times, shortly after we got her she ran to the neighbor's yard, and drank from water with some sort of pesticides.  The odds weren't in her favor, but she pulled through.  She had a litter of puppies, and we kept sweet Dylan.  And the years went on, I left for college, and the time came when the dreadful decision needed to be made whether she should be put down.  The plan was she was going in for an operation, and if the cancer looked too advanced the vet would call my mother and she would decide.  The call was made, the cancer was very bad, and the decision was made  - save her.  I remember coming over to the house ready to console my mom, and to my surprise, Hennessey was coming home.  To be fair she lived another year, and her quality of life was quite good.  She wasn't in pain, but then things turned, and this time there was nothing that could be done.  My mother was inconsolable, because this dog was never mine and my sister's it was hers.  And, despite my difficulty of getting over losses, this one I had expected from the day we brought that sweet puppy home.

It was my second year at Southwest College of Naturopathic Medicine in Phoenix when I decided I needed a dog.  I was browsing through the dog section at Borders, and the page after Bichon Frise, was Bolognese - I had never heard of this breed.  They were from Bologna, Italy, were happy to exercise, but not crazy if they didn't.  Historically they were given as gifts to royalty as their lap dogs - this sounded like the perfect fit!  But where do you find one? After a brief internet search I came in contact with a woman in her late 80's who had brought the Havenese into the US and now was bringing the Bologense here.  So I began a little side project to find my dog.  I know I know, the pound, but I needed a dog with low allergens - every time I found a breeder, I would call the "guru" and she would tell me some awful story about that particular person - they don't pay enough attention to their eyes, those people cross breed, etc etc. About 8 months later, her assistant - term that should be applied loosely - called me.  They had a dog - "Baby" that had gone to a family in St. Louis and their dog didn't like her, so she was headed back to them in Western Colorado and would I like to have her?  She was a bit nervous dog - perfect, like dog like owner, and they thought I would be a good fit.

The plan was made, they would drive her from Western Colorado to Flagstaff.  First hurdle, I hate driving to Flagstaff.  Phoenix to Flagstaff is one of those routes that you must commit.  Once you get out of populated Phoenix, go past the prison, it is a two lane divided highway with no exits.  I hate the thought of no exits, so a million panic attacks later, my friend Jami and I pulled into a McDonald's in Flagstaff, where if there wasn't a dog, it looked like a drug exchange, I handed the couple a wad of cash and they handed me my Baby, aka Sophie. Then they got back in their pick up truck and drove away.  I was terrified.  She looked so vulnerable, Jami drove home, and as she says, from the minute Baby saw me, she was all mine.  She shook, and only wanted to be on my lap, its as if she knew I was the one keeping her.

Sophie has been my constant companion ever since.  Her red streaked eyes are long gone, thanks to a six month course of Angel Eyes.  Her dreadful haircut was taken care of by Johan at Applewood Pet Resort in Phoenix, and her IBS is taken care of by a diet of sweet potatoes and tilapia and she has more frequent flyer miles than most people (under the seat, never cargo).  She is not a typical dog in the sense that she doesn't come up to people asking for affection, she is a one person dog and that works for me.  However, she does seem to have a keen sense of illness.  My mother had a severe case of shingles about 5 years ago, and after hospital stays and being bed ridden, when she first started making little trips down from her bedroom, but still only could lay on the sofa, Sophie would leave my side, and lay directly on the area where my mom's shingles were.  She wouldn't leave her side, she seem to know where she was needed more.

This dog has slept next to me in my darkest days, hour after hour in bed.  I didn't know when I got her how much I would soon need her, but somewhere, someone did.  And I will forever be grateful.

Recently, we considered getting another dog, Lyndee.  A friend of mine foster's dogs for Fluffy Dog Rescue, and posted Lyndee's picture on Facebook.  Lyndee is Sophie's opposite, she was a big dog, will love anyone who is near her, a rescue from Alabama.  From the moment I saw her picture, I had the strongest feeling she was meant to be in my life.  So I filled out all the paper work, had a home visit, and met my friend Stephanie and Lyndee in a parking lot near our home.  I loved this dog, she was sweet, she was pulling through from being heart worm positive, and as we were leaving, and she was about to jump into my friends car, she walked over to me and put her paw on my leg.  I was overwhelmed, with love for this sweet dog - I knew she was to be mine.

It was a done deal.  And then I got home, and the next day had a really bad day.  I couldn't get out of bed, I could barely deal with feeding Sophie and letting her outside.  Sophie is the easiest of dogs, Lyndee was more like a puppy.  So I sat and I sat, and I picked up the phone, and barely audible through my sobs, I told Stephanie that I could not take Lyndee.  I wanted to be the person that could deal with a shedding dog, handle a dog that needed a certain amount of exercise, handle a second "child", but that want was not enough, and it wouldn't be fair.  Stephanie was so kind, and told me over and over how its harder to know when to walk away, but my heart was broken.

I cried like I hadn't cried in ages.  The tears that seem to be ripping apart your insides, and I realized, not only was I crying for the loss of this dog, I was crying because I wasn't well enough to have her.  I called my friend Jami in Phoenix, giving her the news, and she said, you know what, maybe you weren't meant to have Lyndee, but you were meant to see the possibility - think about it, a year ago, the thought of getting another dog wouldn't have ever entered your mind.  And she was right, the very fact that I had the thought, and went through the process of getting Lyndee was a huge step.

Lyndee got adopted the next week.  I had sent the new family a little tag and gift card, and she sent me a picture of Lyndee with her new companion, that looked like a much better fit than Sophie.  She is at a house with 8 acres of land, and a fellow Fluffy Dog Rescue sister.  She found the right home, but I still believe that she found me first to offer me that glimmer of hope.  I still find it difficult to think about her without that pit in my stomach.  Then I look to my right, as I am typing, and see the sweet baby that found me first and I could never feel more blessed. 

Here's the link to Fluffy Dog.  They do great things.

Here's the link to Stephanie's Blog, you can find Lyndee in the older posts

Sunday, October 9, 2011


So much to say swirling in my head, but I am too fatigued and overwhelmed to put the words in an order that makes sense.  But crabby seems to sum it up.  I am crabby, short tempered in my head, and trying very hard to not take out this frustration of the past week out on everyone else.  Because I know at the base of the anger, which is an emotion I don't get very often, I am just plain scared that this spiraling health issues will fail to get better and only get worse.  Because it seems just like when I can handle one set of circumstances, I am asked to adapt to a host of others, and this week has left me mentally and emotionally fatigued.  Two days ago I pruned my roses in front of my house.  Twenty minutes, I pretended everything was normal, just a normal healthy 39 year old, sitting on a step stool, wearing pink gardening gloves, on a beautiful fall day - clipping off rose hips.  People walking by, wouldn't give a second glance, my dear Sophie laying near by, soaking in the sun.  I also had Addi over for an hour that day or the next, can't remember, we played, "mean Queen" and she didn't notice when I let her watch Olivia that I was in the dining room  breathing in and out of the nebulizer.  Three year old bliss, I never tire of watching her, and was thankful for the fact that she didn't know what energy that hour and a half took.  Outing to SteinMart with mom.  An hour in the driveway with my friends and their neighbors.  My hydrotherapy treatment, and hour of relaxation.  These are the moments this week I hold on to, gripping to the moments where I feel "well enough",  the fear of the unknown like a shadow lurking around the corner.  So when I was on the phone listening to my best friend and her "stress" about picking up her daughter from soccer, exhausted from working non stop, who to disperse Brewer playoff tickets to, etc...etc...I had to fight not to yell and scream, I would love those stresses, I would love to participate fully in life again, and I know better, I know that is never fair to compare.  But somedays, I just want to know, will I really ever get better, will I get to stress about the fixable, or am I back in bed, ruminating on what maybe I should try next, who to see next, who has the answers, and please, let me just not get worse.

I'm afraid today.  And I hate being afraid, its a fear deep in my cells, and I'm tired of just trying to get to tomorrow.  It often feels like a cruel joke, all the blessings I have in front of me, yet can't seem to grasp.  I often then feel like a failure, maybe someone else in this circumstance would have figured it out, look at all that people accomplish with far worse ailments, Steve Jobs, Stephen Hawking, maybe I should change my name to Steve.  I know what I would all being doing in good health, how to I get to that level of success I feel I demand from myself in this new state?  That is what I will work on, acceptance, I had spent so much energy denying these circumstances, I haven't fully figured out how to live within their constraints. 

So to all of you at the playoff game this afternoon, I am sorry that I am a bit crabby towards your good fortune, baseball seems to epitomize enjoying the simple pleasures in life.  Who else signs up to spectate at a game with no end for all you true lovers of the game, I am not angry or crabby at you, I am envious of you.  A simple day at the ball park, eating a brat, enjoying the sun, having a beer, the patience to get there and not know when the final pitch will be thrown.  I embrace you and hope next year I can find a way to be you.

Tuesday, October 4, 2011

New Year's Eve 2009

Posted by Picasa

Calm in the Storm

Nine-fifty two pm, Tuesday, October 4th - the calm has finally arrived, I am grateful, I am thankful, I am relieved.  For approximately the last 34 hours, I have been bashed around, thrown around, stuck in a rip tide, struggled and grasping for the calm in a body that decided to become the storm.  And it isn't until this calm has arrived, that I can breathe in freely, and the static of arrhythmic noise has ceased, that I can fully appreciate how little control I had, against, the crashing waves of disharmony.  Dis-ease, that about sums it up.

I want to scream for the road map, an atlas, anyone have a compass - what did you yell for Julie,"vic's vapor rub, Robitussin"? those words came from my head because yours i couldn't forget, when i read them, i understood, not your war, i could never - but i deeply understood yelling for a life boat. Desperately wanting someone to give you the answers on how to solve this problem.  Find me the missing puzzle piece, direct me, I will follow.   So now is as good as any time to thank you, for without your courage in telling your story, I don't know if I would have begun to tell mine. Because it helps and if you can hear me, thank you.  Julie Forward DeMay, rest in peace.

Just tell me where to go, what to do, and I will follow.  I will take the panic attacks back, because even in those times of utter terror and loss of control, deep down, if I dug to the deepest places in me, I knew control was in letting go, and it would pass.  I could practice breathing techniques, behavioral techniques, and if all hell was breaking loose - that pretty baby blue 1mg pill.  But this, none of that works.  I am just a tiny sailboat, in an angry ocean , and I can't find my way back home.

It all started with a hunch ignored, b/c unfortunately the years of panic attacks as a young child taught me to ignore all the warnings, ignore the voice that said "that's scary", and so I learned to push through, and push through, ignore and ignore, and some how I not only managed to survive, I managed to thrive.  It was the coach that told you you weren't good enough, strong enough, tough enough, and you were the winner in spite of it.  But this, I don't know how to beat this, my strategies have failed, and tonight, when the calm came, I realized, I had very little to do with it.  So I must learn how to ride out a new storm.

The hunch was a bowl of chili, the chili that made my tongue feel a bit funny the day before.  But, I wanted to prove to myself that I was over-reacting, couldn't be - beef, tomatoes, kidney beans, celery, I think I can eat all of those things.  But, still, yesterday - forget about yesterday.  But kidney beans are related to peas, and you can't eat peas. Your fine, you had this same chili two weeks ago, but two weeks ago you took a Benadryl.  Or wait celery, celery is a cousin of carrots, and without thinking, an automatic response, you are spitting a small piece of celery out.  IGNORE THE CRAZY VOICE JUST EAT THE DAMN CHILI - but on bite two, that little voice, was no longer the coach pushing me to be the best, it was instinct telling me danger was real. Put down the spoon, and get ready for the storm.

So 34 hours later plus Benadryl plus Pulmacort plus Prednisone plus Zopenx times two and three and who can remember anymore because I am so drugged up, but the storm inside of me finally gave way. Plus the hydrotherapy, colorpuncture, homeopathics - i do not discriminate solutions.  Do I feel fantastic - that would be a negative, but do I feel relief - absolutely.  My throat is sore from clearing it and coughing.  My head feels like it is spinning from the drug cocktail that was needed to harness this relief.  But I am a bit scared, because there seem to be landmines everywhere - and just when I feel like I am making progress,  I am reminded of the strength of mother nature - and all i can seem to do is get out of the way.

This is chronic fatigue.  It comes in all shapes and all sizes, its a body that has short circuited, and your hope is in finding your own personal road map through the battle ground that your body has become.  And you wish that tomorrow when you wake up like groundhog's day all over again, perhaps there will be a pair of ruby slippers, waiting to take you back home to your life before...

Sunday, October 2, 2011

Andy Rooney

Today was a big day - a very big day...mildly quoted from Jerry McGuire.  Today, I completed the entire day by myself.  This sounds like the statement of a child on their first full day of school, or a teenager the first time they were trusted to be on their own, but for anyone out there knee deep in chronic fatigue, you will most likely feel what I mean.  From waking to an 8:25 pm bedtime, I did every step of this day on my own.

My family many joke live similarly to an India, Indian family  - without the large compound, but often it seems that would be more practical.  My sister and her family live in the house behind mine, or as they would prefer, I live behind them - since they were there first.  My parents, live three turns - including turning in and out of driveways, and less than a mile, where my 96 year old grandpa lives with them.  And four turns from them, less than a mile is my aunt and uncle.  So this weekend, when they all made the trek to the Packer game, my boyfriend left for the Brewer's playoff, and my best friend was in Green Bay covering the game - I was left alone to hold down the forts.  And I would be lying if I wasn't nervous.  I made my own breakfast, made my beloved Sophie her breakfast, went and let my sister's dogs out, took them for a short stroll - they were in heaven, due to my fatigue - it was mutually beneficial to let them stop and smell to their hearts content - went to the grocery store, drove boyfriend to Brewer game, stopped for coffee, got sophie a doggie carseat, back to sister's fed dogs, walked through backyard got myself food, back to sisters, short stroll with all three dogs, back home, made dinner, cleaned up dinner, brushed teeth and here we are....I made it.

Seems to most like a pretty relaxing, chill day, but for me, it was monumental.  I am sure I am not speaking to just those with Chronic Fatigue, but any long time illness, one of the overwhelming concerns is the dependency on others.  Somedays its mandatory, and its a strange feeling to need someone to make you breakfast, or go to the grocery store, or take your dog outside, or unload your dishwasher.  And I am so blessed that I have a large group of people, that go out of their way to help me do these things.  But today, I felt grateful that I completed it on my own.

My dad, a saint among us mortals, called me at least 10 times from the Packer game, when they got there, waiting in line to get in, when they got in, at half time, walking back, when they got back to the car, you see the pattern here - but it meant the world to me, because it made the day not so scary.

Tonight, was Andy Rooney's last regular segment on 60 minutes, and he said -

- People have often told me I said the things they’re thinking themselves, I probably haven’t said anything here that you didn’t already know or have already thought, that’s what a writer does, there aren’t too many original thoughts in the world – a writer’s job is to tell the truth – I believe that if all the truths were known about everything in the world, it would be a better place to live – 

thanks andy, often what is a block for me as a writer is wondering if i have any original thoughts, now i won't spend much time fussing over that, because writing the truth, that i can do.

Saturday, October 1, 2011

Like Flossing Teeth

So its been awhile to say the least, not sure where to begin.  Then I am reminded of the last time I went to the dentist, and was frustrated, b/c despite flossing, my gums were bleeding.  The hygienist said - "your probably a pop flosser", a what? " a pop flosser, you pop it in and out but you need to really push all the way to the top of the gums..." hmmm - she was right, despite my efforts, i was definately a pop flosser, dually noted.  And then she said, most people stop flossing for awhile, and the more days that go on that they don't they feel like they failed and for some reason keep not flossing - remember any day is the best day to start again - hmmm - words of wisdom from the dentists office.

and so it has been with this blog, a bit like flossing, i got off the train, and most nights would think of getting back on, but not know how to begin again, so i write in my head, what i would have said.  And the longer i was off, the harder it seemed to get on  - today - I am getting back on the train.  I think it was something sommeone said to me today, the frustrating lack of understanding this illness carries.  I had a really great night last night - it had been an awful day, on top of the CFS, i am fighting a cold  - of course its fall, the first and hoping- but doubting the last.  I wanted to help my sister run some errands, but knew i couldn't, so at least i headed over to her house to hang with the kids.  But all day  I was figuring out how was I going to meet up with my high school friends in the evening, I'm a bit dizzy, weak, unsteady, hurt everywhere, not sure i can pull it together.

Laying on the sofa, with the chills, the venue has been decided.  Luckily, I have two Packer tickets that need delivering, b/c without that feeling of responsibility, i know i will hang in the towel.  Eat, sit up, breathe.  Okay, shower, rest, drink something, sit up in bed.  I think I can do this - lipstick.  Luckily, the evening is always the best for me.  Long story short, I make it there, and I have said it before, fun is never over-rated.  Just seeing people that have known me for 20 plus years, it takes me out of this current life.  It transports me back to a time where I could always rally, being around this group, this energy of friendship, lifts me up.  And the half hour i thought i could only make turns into two.  And for the first time, in this extended network, when my friend asks how i am doing, i don't lie, i have ended the denial stage and someone listens, truly listens, and it is the greatest gift anyone can give.

So when i make it home, the adrenalin wears offs, and i crash into bed, all the crappy symptoms are still there, but a little bit of their power was taken away tonight.  Because in spite of it, I got two hours of freedom - and it was priceless.  So this late morning, when I get a few comments like,  "9:30am and you just got up?"  "are you working yet? no? well I would be fatigued if I didn't work!" and the comments, despite coming from a loving heart, feel like a dagger - its okay - because last night, someone looked me in the eye, and saw me, someone who knows who I use to be - he heard me and understood through the smile that this isn't the easiest of fights and I am doing my very best.

It teaches me, hope is not always about getting better, sometimes just being understood is enough, so I say thank you, to my dear friend - the one that made VanHalen cubes in plastics class, the one whom did many ride alongs in a certain black mercury convertible hunting for flying hub caps, the one whom took me for two jimmy sundaes the night before my wisdom teeth were pulled, the one that shared with me when he first knew he had found his wife...this one is for you. Last night you gave me hope.

Tuesday, March 29, 2011


The misconception about the broad umbrella that engulfs all of us under that heading of "Chronic Fatigue Syndrome" is that we are all just sleepy.  The thing is, is that at times the sleepiness is the least of the problems, and tonight, as I am shaky and nervous from the delayed food reaction i probably had because i decided i would try and eat potatoes, and then since i felt pretty darn good yesterday try a plateful again today, as i sat at the bar with my friends and felt itchy and uncomfortable, chastising myself that it must be "anxiety", despite not being anxious about a damn thing, and i get home so damn depressed that i can't enjoy an evening out with friends, but then, i am in bed, and i feel tight in my chest, so i wait and i wait, just go to sleep, but i can't so i  get up and realize that i am coughing, and i can feel that quarter size tightness in my right upper lung, and my rash on my neck is angry and red, so i begin, its been six weeks since i have used these meds, i take the albuteral, the benadrl, the pulmacort, done with the pharmaceuticals, moving on the the "alternative meds" i take the Lobelia, the homeopathic Aconite and Arsenicum, I call my friend, who thankfully is on west coast time, and a doctor.  Reasured, i am not in danger, but definately congested.  Damn it Damn it Damn it, I just wanted to eat a potato.

So you see, the chronic fatigue for me the list of what could possibly make me feel this dreadful is high candida, high staph, high strep, and then the food allergies came along - don't touch most fruits, then carrots - so don't eat potatoes b/c they are cousins, but then after a prick, no rxn, try the potato...i have waited a year b/c i was too afraid to eat a damn potato and finally last night i had enough of it -so i ate the wonderful potatoes and onions, and they were so damn good i ate more this afternoon, the catch, i had started feeling a bit congested prior to this afternoon's potato indulgence, so i took a benadryl, thus the irritation delayed-

I go through my mental check list....I am thankful for the fact that i am not in pain, I am thankful that I am not suffering from anything terminal.  I am thankful that I have a supportive both financially and emotionally family.  I am thankful that my sweet dear dog sophie, senses i don't feel well and has joined me on the sofa as i type. I am thankful I do not live in North Korea, China, Japan, Lybia, and scores of other countries too depressing to name.  I am thankful, don't get me wrong, but the feeling like the other shoe might drop, the unpredictablility, today felt like a cruel joke.  For the past three days i felt like i was coming down with the flu, weak exhausted, and it took everything to just get up and get through the day, and then like magic last night i started feeling better, and this afternoon even better, and then like a freight train, i could feel the shift in my body, the threat level rise to orange, and it all came tumbling down.

I return to phoenix tomorrow to continue the treatments i had last month, which is another blog - so here's to hope and irony and laughing, b/c when i decided i couldn't sit still, didn't want to talk on the phone or watch tv, but i thought maybe i could write i tried to sign into my blog, and of course couldn't remember the password, i followed the link, to reset and the code word that i needed to type to get access, was Valium -and I laughed. And if only through osmosis and the smile those little letters gave me, all of a sudden I didn't feel that bad.  Here's to another day. And the bottle of Xanax in my purse!

Tuesday, February 15, 2011


I have one hour and fifteen minutes, to find enough energy to pick up my best friend's daughter from school, take her for a treat and then dance class.  Its our special day that we were suppose to do a two weeks ago, but the snow storm of the decade hit, so class was canceled.  Its almost 2pm, I dragged out of bed at 11am, one of those days that making a list of eat, shower, feed dog, let dog out is so overwhelming - please energy kick in, kick in, kick in, i am so tired of disappointing people - that is what i hate most - being a very dependable person stuck in an undependable body.  My mom is stopping by the grocery store to pick me up something more to eat, the fear of not having people around to help gets overwhelming too.  All I have to do is have the energy for two hours, two out of twenty-four that's all I am asking for, two hours to not disappoint the 5 year old that has told her kindergarten class that she has a special day - please fatigue go away, take a break from me for two hours.  The ordinary day feels like the last mile of a marathon - it becomes mind over body - that's the best way i know how to describe it.  Two hours.

Saturday, February 12, 2011

Little Lady

12 February 2011

This is the second time I have seen her in the past week.  Same walk, same camel color wool coat with a belt, same off white knit cap, walking with a purpose. Her two bags of groceries balancing each other out as she walks briskly, head down, on the home stretch.  Today I saw her as I was breathing in and out of the nebulizer, hoping that the expensive Xopanex would open me up.  I looked out the window, with the gray February day, and saw the little lady in the trench coat and just wanted to cry.  She must be at least 80, and yet I wasn't crying for her, I was crying for me.  The last time I saw her I was sitting in the same sofa, it was after 11am and I was shaking and trying to eat my morning scrambled egg ritual.  The TV was on with Hoda and Kathy Lee being wacky, and in the bottom right corner was the Storm Team weather alert - with the temperature and below zero windchills, and as I looked up, there she was - camel trench coat, off white wool hat, head down, briskly walking to the grocery store.  And just like today, I held back tears, for myself.

You see, I was crying, because if I didn't' feel so damn shitty, I would have bounced out of the sofa, grabbed my boots and coat, and ran to have her stop and I would drive her the mile to the store.  But instead, I just sat and helplessly watched her, with concern and envy.  I watch her, and wonder, what is her story - does she have family or friends, is she stubborn and won't ask for help, or is there no one to ask?  And I know, had this been my pre chronic fatigue self, I would have all those answers, but right now I am just trying to get through the day and not lose hope, that by next winter, in the cold days of February, the little lady in the camel coat and off white wool hat, will be riding shot gun as we head to the store.

Disqus for Festzeit