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.
Thursday, October 27, 2011
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.
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
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
Saturday, October 15, 2011
Sunday, October 9, 2011
Baseball
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 time...so 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.
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 time...so 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
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...
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 -
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.
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.
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