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

Scuba

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

Longevity

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

Lyndee

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.
http://www.petfinder.com/shelters/WI266.html

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




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