Tuesday, November 30, 2010

Day 110 - Getting Serious About Having Fun

Two days ago I was a maniac getting the house ready for Christmas. My hubby brought down all the boxes from the attic and I went at them with all the enthusiasm I could muster. My body kept telling me to slow down, take a break and leave some for the next day. I didn't listen. Well, I listened for a minute or two. I would sit down on the couch with a hot cup of tea for a much needed rest, then get another idea, and pop right up again. I fussed with this and adjusted that and by the time I got back to the couch, my tea was cold. My next break wasn't any longer than the first. I told myself to stop, but I was so into it and having so much fun I kept pushing through the pain and the tiredness. That was wrong on so many levels. Yesterday I paid the price.
 
When will I ever learn that I can't do, what I can't do. Geez. You'd think after all these years I'd get smart - but noooo, I just have to do what I want to do, when I want to do it. Not good. I get lured into thinking I can squeeze out another okay-day when I've had a few in a row. The holiday weekend was pretty good and there was enough rest time that I could keep up with what was going on. But, when I get into a project and I am on a roll, it just feels unnatural to stop right in the middle, especially if I'm not flat on my back. Well, that's exactly where that kind of thinking got me. I couldn't even sit up for dinner last night I was so depleted, nor could I get myself off the couch and into bed when bedtime rolled around. What a mess.
 
Yesterday was a wake-up call. Again. Okay, again, again, and yet again. I hate to give in to this fibro thing. I resent it so much some days that I could just spit! I want to wish it away, erase it, stomp it and explode it right out of my life. Enough is enough and I've had it! This is the season to be jolly, merry, hopeful, inspired and uplifted. I am all of those things on the inside - my spirit is filled with joy, but this body of mine thinks it can get the upper hand. I may be down but don't count me out. I may be tired, but my spirit isn't be weary. If I can remember that I can do a lot of things, if not every thing I might be better at striking a balance. I have got to listen to my body. I need to care for it as tenderly and attentively as I would care for someone else. This season is filled with fun things to do and I want to be part of it all. Keeping a balance over the next few weeks will be a test of my resolve.

Monday, November 29, 2010

Day 109 - Life's Dance of Grief and Happiness

My daughter has a single dimple that earned her the title, Princess Hole in the Face. Maybe a strange name to some, but that was the special name her Grandpa called her. It always brought a smile, which brought out the dimple, that led to an affirmation that, 'Yes!", it was the perfect title! I always appreciated the way he made my girls feel because they felt loved and cherished when they were at Grandpa and Grandma's house. Both grandparents had their little rituals that the girls looked forward to - Grandpa's gentle teasing and silliness, the books and crayons and paper that was kept in the basement, the lovely meals shared around a calm and happy table, and the piece of cheese in the fridge with my daughter's name on it. And there was the love, ah yes, that wonderful and tender grandparent love.....
 
These sweet and loving people didn't have to be grandparents to my kids, they did it by choice. I have known these folks since I was just a little kid, and their daughter has been my life-long best friend. I asked for their emotional support when I was in college and they have been there for me ever since. Every person I have loved, they have welcomed into their open hearts, no questions asked. They are my definition of love, dedication and devotion. I want to be as good to every single person in my life as they have been to me. They helped to heal my soul and my life and they were there in a moment in time when things could have gone very differently.
 
It's strange how happy and sad can get all mixed together and it's hard to know which is which. But that's what's mixed up in me today. This is the season for my losing two Dads. Because just as my daughter's had a loving extra Grandpa, I had an extra Dad that showed me love and acceptance and was in my life for many decades. My own father passed away the night before Thanksgiving less than ten years ago and my second dad passed, years later, just after the holiday. Today is the anniversary of his passing. So as I celebrate Thanksgiving and gather into my mind and heart all that I have been blessed with, I am also profoundly touched by what I have lost. These two men were wonderful and well loved, and they are sorely missed. They lived down the street from each other lots of years ago, when I was just a little kid and I knew my best friend's father. Now they reside, side by side in my heart, where I feel their perfect, loving presence.

Sunday, November 28, 2010

Day 108 - In Good Hands - Celebrating Competence

Last night, after we got back from a long, but very pleasant day, we heard a strange noise in the bathroom wall. It was a combination of a snake hissing and water running, but we couldn't find anything. We just had a hot water heater replaced and we thought that maybe there was some connection, but when we turned off the heater, the sound continued. Silly us, we should have turned off all the water. We woke up to a bubble in the bathroom wall and when I put my hand on it, I could feel a combination of air and water pressing against the sheet-rock. Oops. We immediately called our favorite plumber and he came over to diagnose the problem and give us a plan to fix it.
 
It was wonderful to deal with a cheerful and competent person on a Sunday morning. I'm sure my house is the last place this fella wanted to be, but here he was poking and prodding and getting it all figured out, all the while chatting and being an overall nice person. He didn't tell us we were dumb to keep the water on (maybe he was thinking it) but he came here to fix things, not stir them up! It would be wonderful if everyone I had to deal with when it comes to resolving a problem could be as personable and competent. It made an unpleasant situation much easier to deal with and I felt like I got good service, which can be in short supply these days.
 
I need a good long list of experts in my life, and they are important to me. I need my doc, a computer whiz, a car repair person, someone to make my eye glasses, a handyman, a grocery deliverer, a massage therapist, a really good plumber, and more! I don't take their services lightly and I fell enormous appreciation for those who do things for me that I can't do for myself. Those kinds of services make my life easier and even though we're not best friends, it's nice to deal with someone who I feel comfortable with - that I respect and that respects me, as well. I hope that by the end of the day tomorrow I will be done with my plumbing saga, there is still a bit more to do, but I feel confident that I am in kind and confident hands.

Saturday, November 27, 2010

Day 107 - My Many Faces of Fibro

Today was a busy one. All the usual hustle and bustle of a holiday weekend with family. I was thinking about how the day has unfolded and all the ups and downs I've felt and the many faces of me.

Wake up time - oh, don't look at this face. Looks like I haven't slept a wink, my skin is gray and puffy, my eyelids are droopy and I look like and feel like a total grump.

Head to the kitchen to whip up a little breakfast and take care of everybody's meds. Still looking droopy - but starting to open my eyes a bit to see what I'm doing. I don't want to scare my daughter with my grump face so I paste on a half-smile and say a few cheery (but not convincing) words to get things off on the right track.

Time to get dressed - no energy for doing the whole shower, hair, make-up thing so I slap on some sunscreen and a glop of make-up, smear it around and call it finished. I have to be out in public and I do have my pride, but this face will definitely not win any beauty contests!

A couple of hours in the car, taking my daughter back to her group home and I just want peace and quiet. What I get instead is a steady stream of questions and comments so I kind of stare straight ahead with my plain old, I'm tired face, and I try to act at least a bit cheery. I think I pulled it off.

Mid-afternoon and I'm catching my second wind. My hubby and I browse about in a very cool artsy, antique store, and I get excited and interested in what I'm seeing. What's that - a real smile? Yep. It just might be! We have an engaging conversation with a local artist and I feel like a regular, every-day person - fibro fades to the background. Sweet.

Into the car and onto a relaxed dinner with the hubby. I don't think my face looks any different than anyone else's in the restaurant and I feel satisfied that I have had a good day and I think my happy face shows it. I give the hubby an extra smile just to make sure.

It's dark outside, even though it's still early. I settle into my seat for the still long ride home and within just a few miles I am starting to melt into my sleepy face. My eyes start to burn and my lids get heavy and ready to fall, my head nods forward and then I drift off for a nap. Guess I wasn't very good company, but I think my peaceful face showed I needed the rest.

Now I'm facing my computer, reporting on my day and I think it's been a good one. Doesn't matter that fibro came along for the ride. Today it took a back seat. I'm smiling and ready to take on another day.

Friday, November 26, 2010

Day 106 - Cookin' Something Up

Someone once gave me a fancy machine that could slice, dice, shred and mix with the push of a button. It came with a twenty-five page booklet of directions, suggestions and warnings in addition to a short video that described each of the parts that came intricately packaged in the box. I made room for this magical machine in my kitchen cabinet and also found a place for the various attachments, some of which could cut off a finger if grabbed at the wrong angle. I never used that machine and after owning for about ten years, gave it away to someone I know has never used it either!

I thought about that must-have contraption as I was getting dinner ready for company tonight and I didn't miss having it. I just love the feel of chopping veggies and getting the ingredients ready for a meal. There is a calmness that comes from working with food and preparing something I know is going to taste good that I forget about sometimes. It isn't until I'm elbow deep in the preparation that I remember that I really do like to cook. Most  nights I'm beyond beat and it's tough to muster the energy to put together an attractive and tasty meal. Between me and my hubby we do okay, but I really do love feeding a crowd!

This is the time of year when things can get out of hand when it comes to busyness and never ending lists of things to get done. One danger is that I can get so focused on getting ready for what's coming up I forget to take good care of myself, and that includes eating well. So when dinner time rolls around it doesn't take much to lean toward quick and easy and forget about slow and just a little harder. Just because something is easy it doesn't make it better and just because it's harder it doesn't mean it isn't worth my effort and energy, so I have to find the best balance of both. I like to eat healthy meals so I like to keep easy ingredients in the house so I can fancy something up without too much effort. I may not have a gourmet kitchen or the newest and greatest kitchen accessories, but I do know how to put together a meal seasoned with a little bit of effort and a lot of love.

Thursday, November 25, 2010

Day 105 - Everything Counts

Today is Thanksgiving Day. It is an opportunity to express heartfelt gratitude and appreciation for the many blessings in my life. My wish to all is a life filled with abundance and prosperity. My abundance comes in many ways - through a loving family, warm and caring friends, work that inspires and challenges me, a home that gives me respite and comfort, interests that keep my mind and spirit occupied and uplifted and a focus on being thankful for what I have, rather than focusing on wanting more.
 
This is a day to gather around the table and leave the chatter of our everyday lives behind. It's time to talk with each other and have big, noisy, loud and chaotic family discussions as well as small intimate conversations. It's a time to sit quietly side by side and to reach out to those we care most about. It's a time to soften our outlook and maybe open ourselves just a little bit to listening and hearing another point of view, because we are blessed to live in a free land that allows us our perspective. Even when we feel lack, we can still believe there is much more available to us if we can be open to the gifts that life has in store for us.
 
As I gather with loved ones today I will pause and remember those who are less fortunate and make a commitment to do something about it. Every effort in that direction is part of a momentum that can make real change happen and I can be part of another's abundance though my giving. I can think about how I have grown this year and what I have accomplished and be thankful. My experiences are non-material gifts and not every one feels like a gift in the moment. But upon reflection, a focus on finding meaning helps me to see how everything is connected and how it all counts. I can recall moments of joy when something simple took my breath away or made me see the world anew. The food on the table represents the bounty of my life and it makes me know how much I have been blessed.

Wednesday, November 24, 2010

Day 104 - Fibro Won't Get Me Down

The next few days are going to be intense and busy and I really want to enjoy them. I woke up feeling crummy and in a bad mood. That just won't do! I may not be able to control the way my body feels at this moment, but I can certainly do something about my mood and attitude. My morning routine is geared toward creating a positive and upbeat mood for my day. I may not feel the greatest in the morning but I don't have to walk around under a cloud if I can help it. Most days I can create a feeling of more lightness and optimism and I can avoid snapping the head off the cat, the dog, or my hubby if I pay attention to how I start my day. Mornings are a challenge.
 
The day starts with a slow wake up and I allow myself some time for my body to wake up slowly before I get out of bed . I stretch and then take some quiet time to get myself centered and ready for whatever the day holds for me. Once I'm up, if I'm heading out, my usual routine is to play music from my high school days. Don't tell anyone, but as I'm getting ready I dance around in the bathroom. I know. It's dorky. But, in addition to getting my mood lifted, I'm also getting in a little exercise. I can tally up a good number of steps on my step counter on a good morning! Some mornings I can dance along to multiple songs. Some mornings I start dancin' and prancin' and my body says, "Whooooa, not today. Today you just get to listen and sing along." Some mornings I get all involved and find myself exercising for twenty minutes or more. On a good day, that's good. On a bad day, it puts me on the couch. Trouble is with this freaky fibro, I never know which is which. So, I start slow and I'm getting better at reading my body. And regardless of the steps I count, I feel happy and alive!
 
There aren't many days that fibro gets me down. I kind of roll with the punches and see this as something I have to work with, and around. Getting all hyped up about what I can't do wastes the time I could be focusing on what I can do. I choose the path of least resistance. If I have the energy to do a little job, that's what gets done and the bigger one waits for another day. My mornings aren't a barometer for the rest of the day. I can feel great getting ready for work and then crash at my desk or I can start slow and wind up cleaning closets later in the day. This really is a lesson in being in the moment and using the energy I have available to make choices that support my overall well-being.

Tuesday, November 23, 2010

Day 103 - Little Things Do Mean a Lot

We had a bit of an adventure last night - kind of a turning lemons into lemonade kind of thing. We're having our furnace replaced as well as our hot water heater so we didn't have heat or water last night - that's the lemon part. Instead of staying home and being pioneers, campers, explorers or any other name we use for roughing it - the hubby and I went to a hotel for the night. We packed our overnight bags, fed and watered the pets and off we went. It was fun!

It was neat to have an adventure I didn't have to plan for, figure out, or go through intricate gyrations to get organized. We just popped the stuff we needed into a bag, hopped in the car and drove a whole two miles to get to our destination. We were greeted with a glass of red wine, compliments of the house, and a room that was comfy and pretty. Instead of heading out for dinner, we ordered room service - yummy Caribbean food from the downstairs restaurant, watched a little boob tube and settled in for the night. I slept really well and woke up feeling happy and thankful for the comforts of a hot shower and a heated room! Little things mean a lot.

I love that I can enjoy the little things in life. It's easy to get into only celebrating the big things - holidays, promotions, sporting events, birthdays and that sort of thing. But it's sweet to notice when a little something happens that makes me smile or gives me pleasure. A family gathering, an afternoon on the porch, a home-cooked dinner that tastes really good, or a glimpse of nature that's out of the ordinary are all events that deserve my attention. I have plenty of lemons around to make me sour and unappreciative, but when I focus on the wonderful little things that fill my days, I am making lemonade.

Monday, November 22, 2010

Day 102 - It's About the Choices I Make, Not the Condition I'm In

Yesterday was a bad day, a really, really bad day. I dragged myself out of bed and felt like I was a drowned rat. No energy, migraine, felt like absolute crap and there I was up in the mountains wanting to be with my family and enjoy our last morning together. We had planned to leave fairly early and there is a lot to do to leave the cabin. The kids helped out before they left and that gave us a really good head start, but I know about all the details that go into leaving the cabin and I didn't want to leave them all for my hubby to do. I knew we wouldn't get out of there in time for his work commitment later in the day if I didn't lend a hand. So I got myself dressed and took on one tiny little job after the next. Hair and shower - nope. Make-up - are you kidding? It was all about the house. I did a little work, then sat a bit. Did a little more, and sat some more, all the while feeling like I wasn't pulling my load. There was so much to do and I really wasn't all that much help. But at least I felt like I was contributing.

We finally got into the car, a full hour later than we thought we would and started the four hour drive home. When my hubby started the engine, that was my signal to put my seat back and go to sleep. I slept the entire way home. We pulled into our driveway and I dragged myself into the house. My head felt like it was filled with cobwebs. I didn't write my blog until dinner time when I finally felt like I was coming back to life. My hubby was gone for the evening and I sat down to go through the stack of mail. An article in one of the magazines caught my eye. I read that Laura Hillenbrand has just published her second novel, Unbroken. It's a World War II story of "survival, resilience, and redemption". Hillenbrand's first novel, Seabiscuit was hugely successful and was made into a film.

This second novel comes ten years after her first. Seabiscuit was written while Hillenbrand was lying on the floor, papers strewn around her. She has Chronic Fatigue Syndrome. I found that out not long after my fibro/chronic fatigue diagnosis and I must say I was, and am, quite impressed with this woman's grit and determination. She has found a way to feel, and be, productive and successful on her own terms and that is no small feat. Hillenbrand has become a beacon of hope for me and I'm sure for others. The words she uses to describe her WWII story actually describe her own struggle as well as the struggle each of us faces with any kind of affliction or adversity. We each have our own story of survival, resilience and redemption. I have an opportunity to live by choice rather than chance.

Laura is mostly housebound and has been ill since she was nineteen years old. She has chosen life over debilitation and has found a way to be in the world, even though she is physically separate from it. On my bad days I wonder how I can possibly keep going like this, but someone like Laura Hillenbrand reminds me that it's all about the choices I make, not the condition I'm in. I'm going to remember that and today I choose to take care of myself and still aim for getting something done. I can do that, for sure.

Sunday, November 21, 2010

Day 101 - Legacies, Memories and Lost Moons

Today is special for me. First, it's the anniversary of my Dad's passing. A very sad day for me that lead to a lot of distress and unhappiness. I miss him still and I know he would love to still be around. He was a very social and dapper kind of guy. A man's man, some would say. It's also the night of a Blue Moon. That's when there are four full moons in a season, rather than the usual three. It's significant for me because I used the Native American phrase for a blue moon when I named my place in the mountains  Lost Moon Cabin. For a long time I have been intrigued by Native American tradition. I don't pretend to be any kind of an expert and I have only dabbled in finding out more about my interest, but there is a story that connects me, my Dad and that tradition that reminds me of how everything is connected.
 
When my father passed away he was in the middle of reading a book about the Iroquois nation. He told me he was reading it because of another book he had read and he wanted to learn more. I have that book. My Dad's will left something for my sister and me and for us to look after my brother, who has had a decades old battle with schizophrenia. I wanted to do something with his gift that would be a legacy to my family so I decided to purchase a plot of land up in the Adirondack mountains in New York. They are contained within a six million acre park which preserves the heritage of that land and its history. A realtor showed me one piece of land and I wasn't interested. The second plot was impressive and I purchased it on the spot. It's on Lake Abanakee, a small quiet lake nestled in the woods. Once I got home from making my purchase I wanted to know more about the Abanakee tribe who, generations ago, were settled in that region. I remembered my Dad's book and went right to it. Now here's the connection part - the Abanaki tribe is the very first entry in the index of the book my Dad left at his bedside. When I discovered that, I felt a warmth surround me and I knew I had made exactly the right decision.
 
I named the cabin Lost Moon because I wanted to show respect to the Native American history of the Adirondacks and I wanted something to reflect my love of nature, as well. So as I was reading about the Abanki's I came across their story of the Lost Moon (which we call the Blue Moon) and I knew that was the perfect name. (Not to mention the fact that we only get up there once in a Blue Moon)! So what else was special? Tonight there is a Lost Moon (thanks, Jim for reminding me). Not only was I up at the cabin this weekend, I was there with my family and that made it very special. I had a really bad day today - super crash and not good. But, I feel good inside, knowing that my father would be proud of the legacy I have created for my daughters. He was fiercely dedicated to his family and visited his siblings regularly. He came late to expressing his dedication to his daughters and his son. But he did. I know he loved us and was proud of us, too. Things never replace people, but that cabin is a constant reminder of my father and I always think of him with a grateful heart.

Saturday, November 20, 2010

Day 100 - Adventures of a Scattered Mind

I am sitting in an internet cafe trying really hard to write this blog. There is music playing in the background and it makes it almost impossible to think. I really don't know how much of a blog I can write today with the music creating interference in my head. Ah, it just went off for a second - but nope, it's back to stay. Now I'm singing the lyrics of my prom song and I don't want to be doing that. Geez, it's so easy to get distracted. I have a feeling  it's not all about the fibro either. I've always been a person that needed help staying on track....just the way you look tonight. No, wait, that's my prom lyric intruding again. OK, back to my thought....I have a hard time staying on track and it is a real source of frustration for me.

When I clean my house, it usually looks like a tornado hit it by the time I'm half way through. It's because I can't seem to stick with one thing at a time. I'll go to a top drawer to put something away and then I'll find something in there that doesn't belong. I take it out and set it on the counter until I figure out where to put it so I'll know where it is. Then I go back to the task I was doing and I come across something I've been looking for and so I sit for a few minutes checking it out. Then of course it brings something else to mind so I have to go and check that out, too. I run up the stairs with one thought in mind but I am greeted by a stack of mail I left next to my desk. Better get to that. I sort things through and separate out the bills. Then I have a stack to file, one to get to later and another of stuff that interests me but I don't have time for now. I put the bill basket next to my computer and decide to pay the bills online. I open up my computer and figure I'll give my email a quick glance. I do, and there are a couple of messages I need to return, an interesting link to check out and then a really quick game of solitaire, just for fun. Well now I'm thirsty so I go downstairs and make a cup of tea. While the microwave is heating the water, the phone rings. I have to deal with something at the nursing home so I call my sister and we figure it out. Now I'm tired so I decide to plop on the couch for a few minutes. It feels good to be under the cozy throw and I drift off into a peaceful nap. 

When I wake up I realize I haven't filled my prescription at the drug store so I hop in the car to go and drop it off. The drug store is more like the old five and dimes than it is a place to get meds. I check out the holiday decorations, pick up some things for my mother and decide to check out the pet section to see if Rusty might need something. By now I'm tired so I pay for my loot and head home. While I'm unpacking my bags I see the stuff on the counter that I had left earlier in the day. My cold tea is still in the microwave and the bills weren't paid. I did get to the drug store, but I forgot to drop off my prescription to be filled. Aargh. It's just maddening. Some days I head out with a list I forget to check, or my list sits on the front seat of the car while I try to go it alone. I feel badly for my hubby because of all the things I forget to do. They all get done eventually, but it seems almost impossible and lasso in this brain of mine that seems to like to go off in lots of different directions.

My soup is now cold and so is my coffee. There is still music that I don't really like playing in the backgorund and it's too loud and it's annoying. I just want to get out of here. i think I'll take some quiet time and give myself a rest. Still seems that I am better at organizing my thoughts than I am my life, but every day is step toward doing it better.

Friday, November 19, 2010

Day 99 - Hey Baby, It's Cold Outside

Now that the weather is a bit nippy, it’s time to think about getting through the winter.  No more ease of summer.   The mornings are chilly and if I’m going to run out to the store I have to grab my coat.  If I leave the window open to get some fresh air while I sleep, it has to be just a crack, or I wake up with a frozen nose and  buried deep under  the covers.  There’s no more running out for the mail in my bare feet or reaching for a long cool drink. Things have shifted and although I love the fall, winter isn’t far behind and it is not my favorite.
So how can I get through another long, cold, gray season? Well the first thing is to start thinking about the holidays and how much I love them. But aside from that, what is there to look forward to? Well, I love big fat socks and soft jammies. I love hot chocolate and a hot cup of tea. I love the way it feels to come in from the cold to a nice warm house. I love that I can have a fire in the fireplace and sit on the couch, under a blanket and read all afternoon. I like to eat comfort food and look forward to making something from scratch.  I really like the way everything seems to revolve around house and home when it’s cold and I am thankful for warm boots and thick gloves that keep my fingers and toes warm.
Every season has its joys and winter is the one where I really have to focus on the positives because otherwise I would just be miserable. When I get cold it seems to take forever to warm up and if I don’t have my gloves on, my fingers feel like they are on fire. It’s dark way too early and it seems there are more gray, than sunny days. When I keep my mind on the good things I have a different perspective on a sea son that seems a bit too harsh and unforgiving.  When I visit the mountains I am given a heavy dose of early winter. Part of it feels exhilarating, especially when the sun is shining and the air is still. But once the sun hides behind the clouds and the wind starts to whip around my face,  it’s time to go inside, hunker down and wait for spring.

Thursday, November 18, 2010

Day 98 - Finding a Doc With Expertise and Grace

Sometimes, you just have to laugh. I saw a doc yesterday to help me deal with spasms in my esophagus that kicked up again when I started taking multiple supplements every day. I've had the problem since I was a kid and usually it only strikes a time or two each month. Once I started popping tons of pills each day, I must have revved things up. Each time I would eat something, I'd feel that nasty squeeze that makes me sit at the table with a mouth full of food, waiting for the pain to subside so I can swallow again. I've reduced the number of pills I'm taking and have been cautious about the foods I eat. But the solution - a pill! So here I am explaining that I can't swallow pills without pain and he gives me a pill to fix it. That is just too ironic. I guess the medical philosophy is to fight fire with fire!

What's even more interesting to me is that I will follow the doctor's advice, even though it seems silly to me that I have to do something, for at least a little while, that doesn't seem to make sense. Why? Because I trust my doctor. I've been to him before and I have to say he is just about the nicest doc I've ever dealt with. He has a way of making me feel totally comfortable and able to ask any question I have floating around in my brain. He looks me straight in the eye when we talk and after I have had my say, he looks down and jots a few notes. He shakes my hand when he walks in and then again when I leave. His office staff is sweet and courteous and they make an effort to get me in and out quickly. I might also mention he is the doctor that introduced me to the wonderful world of the colonoscopy - so a visit with him is no joke! I trust his judgement, not only because he's pleasant, but because he knows his stuff and it shows.

It sure doesn't take much in this world to create a little comfort and security. A smile, a sincere thank you and someone that looks you in the eye when they speak, makes for a very civil exchange. In a world where civility seems to be in short supply, I am happy to encounter people who still walk the earth with grace. You know them when you walk into a shop, or are greeted from behind a counter. You see them at work and when they are playing on the field. They seem to carry themselves a little taller and confidently walk with us rather than on us. They look us in the eye when we speak and they listen when we have something to say. If they disagree, they do it in an agreeable fashion. My doctor is a gentleman and when I think about some of the physicians I have had to deal with on my fibro journey, he and my Lady Doc are at the top of the list. The others may have been smart practitioners, but an easy style and a sense that my needs are addressed and resolved, in a professional and friendly manner, goes a long way for me.

Wednesday, November 17, 2010

Day 97 - Pardon Me While I Check My List...Again.

I've always had some difficulty with the details in life and it is probably one of those hard-wired things in my brain that allow me to do some things with complete ease but deal with the little things like I'm still a beginner. It doesn't matter how many baskets, shelves, folders, pretty pads, or stick-ems on the mirror I use to get organized. My brain just doesn't do organization very well. I can organize my thoughts, but not my purse. I can make a kitchen cabinet look pretty, but forget what's in it. I can write my blog, but forget to mail a check. The world isn't always forgiving of those kinds of failures. We seem to hold organization in very high regard and think that people are "good" when things are tidy and neat and not so good if they aren't. I still cringe when someone stops by and my house isn't looking as tidied up as I think it should. This is a stress I need to get off my plate. I don't want to be judged negatively, but I can only do what I can do. My friends and loved ones are not the problem here, it is my own self judgement that is getting in my way.

My daughter thinks it would help if I had someone to "organize" my life, run errands and keep track of the details that seem to get away from me. Not a bad idea, but I don't really think that's what I need. I would much rather a person that could magically appear every time I get confused, disorganized, forgetful, overwhelmed or just too tired to complete what needs to be done. Now there's a thought. I have never considered magic as a solution to my travails. I may be onto something there. Remember Bewitched? Samantha just wiggled her nose and she could materialize whatever she needed to get herself out of her current fix. A journey into the land of make believe seems like a very logical solution! Whenever I need help - viola - help is on the way. It would sure some in handy managing my meds.

I thought I had my med routine all figured out, but every time there is a change, I get all confused and it takes me a few days to get it right again. I have trouble reading the labels and knowing what is what. Heaven help me when the drug store gives me a generic that doesn't match the name of what I'm supposed to be taking! I'm still discovering little mistakes I've made with my schedule and sometimes it makes me smile to think I could be so silly. And it's not just the meds, I get surprised when I find things I once put away and couldn't remember for weeks where I put them. I carry letters to be mailed back and forth in my handbag, forgetting day after day to mail them. I look at my list and still don't get to the things that are there because I get distracted and never go back to them. It's an ongoing battle to keep the details of my life in order and there are periods of time where I am just terrible at it. I'm working on this. I put it on my to do list, and when I get there I'm sure I'll notice! 

Tuesday, November 16, 2010

Day 96 - Something Good is About to Happen!

What a day today has been. I started the day looking out the window at a gray, dreary morning. No sunshine. I flipped on the radio to get the weather report for the day. Instead of the weather I got a local shock-jock doing a rant and rave about an issue being bandied about in the news. I could agree with part of what he was spouting, but I felt that his argument was one-dimensional and didn't show much respect for other dimensions of the situation. So I decided to call in and speak my piece. As I hung on the phone, waiting for my call to be picked up, I felt my stomach do a flip or two. What was I getting myself into?
 
The producer answered the phone and I spoke with her about my point of view and she decided she would air my comments. Cool. So I got to say what I wanted to say and I felt good about the way it came out. But that's not what I liked best about the experience. I liked that I was able to engage this loud and boisterous radio personality and come away with my skin. He didn't yell at me, call me stupid or make fun of my point of view. I wondered why I didn't feel the sting of his typically scathing comments like most of his callers do. Was it because I started the conversation in a respectful way, acknowledging his right to have his point of view? Was it because he could see things my way, if even if in just a tiny little way, or was it that I was the last one to call in and time was up? Doesn't matter. I felt great after speaking my piece and ah, yes, finding my voice.
 
There is such power for me in living each day and staying in the moment. I just never know what direction my day will take and which way it will twist and turn. Sure, I can know what I have planned, but within that, there is infinite possibility for who knows what to happen? There is power in setting goals and feeling like I have some plan for where I'd like to be, but for me, it's those little surprises and opportunities that I snatch up in my hand that give my life flavor and excitement. Today I was on the radio - for a whole three minutes and it put some pep in my step. I know what's on my list for tomorrow, but I sure don't know what's going to happen. I think I just can't wait to wake up in the morning. Rain or shine, I'm going to be watching for what's about to happen. I bet it's going to be good!

Monday, November 15, 2010

Day 95 - Loss and Acceptance, and Still Diana

I spent yesterday afternoon reading on the sunporch and got into a really good story (written by woman with a PhD in neuroscience at Harvard) about a woman and her experience with early onset Alzheimers. I am in no way saying that I have experienced the devastating losses the main character experiences living with a brain ravaging condition, but about mid-way though the book I burst into tears. Guess I could relate to her early indicators that something wasn't quite right. I share her frustration at not remembering things that she knew deep in her bones, at missing out on the life she could have lived and the frustration the people she loved expressed about her limitations. Some were in denial, as in, oh, everybody forgets things. Or, if you get help it means you are "giving In" to your condition and not fighting back, or worse yet, you're getting lazy. Part of the reason I got upset was that some of the tougher comments Alice's family expressed, I've said to myself! It's that inner voice I want to quiet when it tells me how it really is and what I really have lost. I want it all back and I want it NOW! Enough already. Can't I just wave some magic wand and make this all go away? Can we just pretend this has been a bad dream and I am about to wake up to my old life?

I seem to fly back and forth between two polar opposites. There's peace and acceptance when I face fibro with an eye toward making the best of what I've got and with the optimism to think it can get better. And yet on another day I can feel pure despair. I don't want to be like this. I don't. In my down moments I am frustrated, annoyed with myself, sick and tired of being sick and tired, and not wanting anyone to help me with ANYTHING!!!, thank you very much. I am capable and I can handle this (maybe?). Some days there aren't enough words in my vocabulary to express the ups and downs that I feel because my days are so unpredictable. "Take it easy, don't do too much, you should rest, how are you today?" All reminders that I feel "less than". I love that people are so caring, but it seems that every moment of my life is infused with fibro and I love those times when I forget it's there and I can do exactly what I want to do, for as long as I can do it.

Two days ago I was feeling appreciation and acceptance. I was happy with my life and saw fibro with an eye on potential. I still am happy with my life and the opportunities I have to live it well. But then I read that book, Still Alice and I was once again faced with the fact that yes, the essence of me remains the same, but my expression of who I am is what gets limited. Yesterday I lost my voice, maybe what I needed was a good rant to get it back. Sweet and happy, loud and grumpy - it's all me. I have to hold onto the thought that this is where I am and that's that. I can be somewhere else tomorrow - but if I am going to love myself in a way that empowers me and encourages me to grow - I have to love it all. I'm feeling a bit better after spilling this all out and it's time to go to work. It's just another day and I'm Still Diana.

Sunday, November 14, 2010

Day 94 - No Voice, But With Plenty to Say

Yesterday started with me sounding like Greta Garbo, all gravelly and alto. Today I have no voice at all, just a whisper or a squeak is all I can get out. Every few years I seem to have a bout of this and it always creeps up the same way. I don't see it coming, but if I look back at the few days before, I might have been a little less energized or had a crash day that didn't come from doing something out of the ordinary. My voice is typically low-pitched and it can have a rough quality to it, but I don't usually get struck silent! So when I woke up yesterday with a bit of a frog in my throat I didn't expect to lose the whole thing. I went about my day acting as if it was all fine - then wham! Gone!

So here I am with a quiet little voice and being this way is quite a challenge for me! I love to talk, chat, debate, commiserate, discuss, share, blab and babble. It's all good in my world! It makes me happy to be in an exchange with someone I love or even someone I've just met. Even though I love to chat, I am equally comfortable being quiet. I don't mind being in the house alone. I don't need a radio or TV in the background to keep me comfortable. When I am silenced this way, I enjoy the opportunity to settle in with the quiet and enjoy it. I won't make any phone calls today and any calls that come in will just have to wait. I can get back to folks in a text or email and if I really do want, or need to talk. I can do an electronic conversation if I have to, but I think I am just going to enjoy the time off from all of the input and conversations.

This morning when my hubby started to talk to me, he used a whisper. It almost seemed that since I was quiet, he had to match the level of sound. It struck me as kind of funny, but I get it. It brought everything down, and slow and even more quiet. But I'm not sick or tired today - just quiet - so I'm okay with his energy being high. That got me to thinking about how we "catch" energy. If I am in a frenetic environment, even if I'm not consciously matching it, my body is probably responding to it. If I am in a calm place, it's probably the same. One thing I know I can do is to put myself in a place that matches the energy I want to experience. I do that in the morning - I always have upbeat and happy music playing. When I get home from work, all tired and worn out, I need some quiet time before I'm even ready to turn anything on. Today I am going to lay low, even though my energy feels high amd give my voice what it needs to heal.

Another thing I think about when I lose my voice is where in my life I feel like I have no voice. As I reflect upon that question, I am pretty sure I know where that came from this time. I'm going to keep that little piece to myself for now, but be assured that I will be processing that experience as I lay out in the sunroom, soaking up some rays and resting this voice of mine. Just because I don't have a voice, it doesn't mean I have nothing to say. So for today, I'm quiet. But tomorrow I'm back in the mix!

Saturday, November 13, 2010

Day 93 - Another Day of Gratitude

Today I am feeling a sense of gratitude and appreciation. I sometimes think I couldn't love my life more than I do. I know it's messy and complicatred and I have a to do list and a please don't list that needs attention. I have bills to pay and things to figure out. But I am happy with my life. I am so blessed to be where I am doing what I'm doing with the people I'm doing it with. I have friends from eons ago and new friends as well. I have a family that is just a tiny bit whacky and filled with its own definition of love and caring that seems to balance out at the end of the day. I love my work and my job and I am thankful that both have given me so much joy. I like the way it keeps me on my toes and nudges me forward into learning and growth.

I appreciate where I live and the fact that I have a pillow under my head and warm blankets to cover me. I have food in the fridge and a few take out places that tickle my taste buds. I am especially thankful for a hubby who grocery shops and a grocer that delivers. I am thankful that when I lok out my window I see trees and if I walk a couple of blocks there is a pond with ducks and a few little fish. How could I want more? The place where I live is close to family and I can get where I need to go without too much drama. I know there are plenty of people who struggle far more than I do and I pray for them and at the same time pray that there is prosperity for us all.

Each day I give thanks, I am reminded that I am where I am because of a combination of effort, positive thinking and of course, many blessings. I don't really believe in luck because I believe that every choice I make puts me on a road that will eventually become my path in life. I don't believe my hardships are necessarily bad because they have helped to shape me and my character. It seems to me that anything that comes too easily carries with it the risk of going away just as effortlessly. So today I will include fibro as a blessing in disguise. Why? Because it has shifted my work into a new and excitng direction, it has made me look at what's important and to live my life through that filter, it is causing me to take my health seriously in a culture where it is too easy to just let it slide, and I have met new and wonderful people. In addition, I am putting my thoughts down each day and finding a new discipline that suits me quite well. Everybody gets something eventually and if this is what I've got, I'll deal with it. Along the way I'll pay attention to the lessons it brings and keep my focus on getting stronger in body, mind or spirit each day.

Friday, November 12, 2010

Day 92 - A Fear of Needles Got Me Stuck (pun intended)!

Needles used to make me very nervous but I've had so much blood work done over the years, that now I kind of take that stuff in stride. The new addition to my wellness regimen is home injections of vitamin B. Hmm. A nurse aiming a needle at my hip gives me lots more confidence that the thought of wielding the needle myself. I was given a lesson in self-administration and the process of prepping the vial and filling the plunger was kind of fun, actually. I felt like I was in a role play - me playing nurse! I did fine until the point of impact. Just couldn't get my brain to literally, let me take the plunge. I told the nurse I wasn't sure I could do this and her reply was, "Sure you can." With that she wrapped her hand around mine and zap - in went the needle. Whoa. That was quick - and not bad at all. My fear had me nearly immobilized, but with a bit of support, I broke thorough.

Fear is like that. Two things happened in the needle situation that got me past my fear. The first was that I expressed my fear and the second was that I had support in moving past it. I describe myself as an optimist who is willing to rendezvous with reality. I know that I don't have to express every sad thought, bad mood or crummy day. I can be out in the world and share happiness and good cheer. But if I do not express my fears, they stay hidden and subtly drain my energy. My fear doesn't even need to be a topic of discussion with anyone else. I have to first acknowledge and respect that feeling before it has even a small chance of being resolved. Nagging fears threaten my optimism and color experiences that don't even have anything to do with what is giving me concern. That's why I like to write. I can express myself without getting into it with someone else and give my fear its voice. That clarification can help me to share with someone I trust and work things through.

That brings me to the second piece of the needle fear that helped me move past immobilization to being okay - and that was support. When the nurse took my hand, I got stronger and together we got the job done. Having a friend or loved one with a willing ear, who stands beside me, can be the difference between staying locked in fear or getting unstuck. I stay away from people who negate or minimize me and I have learned how to volley back comments that don't help, or are hurtful. "That's no big deal." doesn't help me manage my fear - it says I'm silly for having the fear. All of us want to feel strong and capable and discounting feelings that are swirling around inside only makes that harder. I haven't done my first injection at home yet, but when I do, my nurse's words will ring in my ears and I will picture that caring hand around my own, knowing for sure, that I can do it.

Thursday, November 11, 2010

Day 91 - The Cure Cottages of Saranac Lake - An Answer or a Question?

I love the Adirondack Mountains in New York and I love the way I feel when I'm among the trees and near the lake. There's something called "The Adirondack Cure" that relates to the TB epidemic in the late 1800s up until the mid 1940's. People came to cure cottages in Saranac Lake, a small town in the six million acre Adirondack Park, for the "rest cure" in cold, clear mountain air. Each day the men and women who came there ill, and with little hope of recovery, would come to sit on the porches of the sanitarium, the cottages or camps, and breathe in the fresh air. Each residence had a "cure porch" with sliding glass windows, in which patients spent at least eight hours a day resting on special day beds or reclining chairs. Their days were structured around the cure and the area became a beacon of hope for those who could make the arduous trip to those mountains. They had up to an 80% cure rate, when back in the large cities, a diagnosis of TB was surely a death sentence. The cure didn't happen overnight - some people were able yo leave after a year and others stayed as long as seven years before they were fully recovered.

I'm heading up to the mountains again later this month and I am thinking about how I can make the most of my trip. I've seen pictures of the cure cottages with chairs lined up on the porch and patients bundled up to their noses, sitting in the frigid winter air, or resting comfortably when early spring arrived. Rain or snow, hot or cold, every day those men and women "took the cure" and got better. The cure wasn't for the meek of heart. These people left their loved ones and were fortunate to have a single visit from family in a year. They created a community among themselves, built friendships and found romance. They lived their lives doing creative activities and the kinds of things that would engage their minds in a way that didn't tax their fragile bodies. They wrote letters home and got letters back. But they stayed in an environment that supported their wellness. I have to learn from those lessons if I am going to beat this fibro thing.

Here is what's so hard for me. When I feel good I WANT to do what I want to do. It feels so unnatural to sit on the couch and rest when I think I feel fine. But here's the scoop - I may feel okay, but my body suffers with fibro just as much on a good day as it does on a bad one - I just don't notice it so much, especially when my pain is managed. If I read or do my beads when I'm having a good day, my eyes start to give out and that's my signal to stop. But if I'm out and about, unless I have a crash, I don't have a signaling mechanism that tells me when enough is too much. It's such a balancing act and even after all these years trying to manage it, I still don't seem to get it right. There isn't anyone to monitor my activity level or send me to bed when it's time to rest. I am distracted and pulled in a million different directions and I never seem to unplug unless I'm in those mountains. There I have no cell phone, no computer or TV and things are very simple. I don't get there often enough and maybe that needs to change.

I have been fascinated by the concept of the fresh air cure and have always wondered if a year in the mountains would turn this around. But I am not brave enough to leave everything behind to go do a "cure". And even if I could, is the fresh air cure a possibility for fibro and fatigue? The thought intrigues me. I'm not going there yet, but it's something that I am going to keep in the back of my mind, because maybe at some point, the time will be right. But we are in a different age - one where we are connected all the time in lots of different ways. Is it possible to take an 1800's cure and plop it into the 21st Century? I don't know. But I am going to hold that question.

Wednesday, November 10, 2010

Day 90 - Happy Dance When I'm UP, Peace When I'm Down

My dog is pretty funny and very smart (just like everyone else's). He did something today that got me thinking. The plumbers arrived early this morning to fix a leak. Rusty loves to greet people at the door, but he's more like Tigger, from Winnie the Pooh, than a dog. He bounces and prances and twirls and runs in circles. He just wants to show anyone who comes through that front door that he couldn't be any happier to see them. These poor plumber-guys just wanted to get their work done and they were going to be going in and out, so I put Rusty in the sunroom and just closed the screen door. He could see us and hear us, but he wasn't with us. It amazes me that he didn't go right through the screen because he was really motivated to go say hi. Even though he could push through in a flash, he saw the barrier in front of him and he settled right down. He was calm and relaxed and he seemed to be enjoying himself just hanging out.

I don't want to live my life like I've got a screen door in front of me and become resigned and just sit down and give up. One of the big themes in dealing with fibro is not to push past a point where energy is depleted. But how do I know what that point is?  I want to be like Tigger - all bouncy and enthusiastic about life. I want to be like Rusty who shows his pleasure at being with people. I also want to accept where I am and not push it, the way Rusty did by settling down and chilling out. Yesterday I went to work, ran a couple of errands and stopped in at my daughter's on the way home. Why didn't that knock me out when other days all I can do is get back and forth to the couch after I've made a cup of tea? Even though Rusty got to be okay with the screen door closed, he really did have a barrier in front of him. I gave him a stay command and that worked. Is that what my fibro does? I was nice to Rusty when I gave a command - but fibro isn't so nice to me! Fibro commands, demands and reprimands if I do not give it what it needs. Problem is, the needs change daily and sometimes even hourly. Finding just the right balance of doing and resting remains a challenge for me.

I met a woman recently who said she had fibro. I said I was sorry to hear that. She said, "Don't be. I refuse to give into it and I just live my life the way I want to. You just have to pretend you don't have it."  Wow. Really? If only I could. I thought about that comment for a long time and when I get those pull-yourself-up-by-the-bootstraps-and-soldier-on comments I want to spit! Are you kidding me? Every day I make my choices hoping I am striking the right balance so I can enjoy life and feel productive. Rusty sat next to that closed screen door and accepted that he couldn't move through it. He was relaxed and happy being out on the porch and he wasn't begging to come in. Would he rather have been with me and the plumbers - probably. He was calm and quiet but when I opened that door he hurled himself into the room and did his happy dance. That's my model for dealing with fibro. Realize that some days I may have a barrier, but I can be at peace when I'm down. But when I'm up - go at life with gusto and see where that takes me. And on my way, I'll be a little bit of Tigger, a bit of Rusty and a whole lot of me!

Tuesday, November 9, 2010

Day 89 - One-Downsmanship - My New Singular Pet Peeve

A magazine I used to read had a section for readers to send in their Pet Peeves. I've never been one to keep a mental list of things that annoy me. Most annoying things I experience come and go and are typically in a particular moment when I am already feeling stressed out and miserable. Today though, I've decided that I am going to create a pet peeve list, but with just one thing on it. I am going on record as being officially ticked off when a person plays One-Downmanship with me. You know the game. I say I've had a bad day and your day was horrible. I say my hair has the frizzies and yours not only has the frizzies but its started falling out. My plumber showed up late- yours never showed up at all. A sales person really helped me to find exactly what I was looking for and the last time you were in that store no one helped you at all. You get my drift - the other person is only happy when they're not! It's exhausting. One-upmanship - when whatever the other person has, says or does is better than you, is much less draining for some reason and doesn't make my pet peeve list.

Now granted, when I share my tales of woe with a friend or my hubby, I might be looking for acknowledgment that I've made it through or overcome a rough situation. I may need some moral support or maybe even a little empathy. Sometimes I just may need a willing ear. We can all relate to needing to share life's little challenges and annoyances with our dear ones. A good session of tossing them out on the table for all to see can be quite cathartic. Once it's done, it feels good to have dumped the whole mess. There is a different energy when someone is using one-downmanship - it starts to feel heavy and negative and it seems like everything gets dragged down and then not even good stuff is worth talking about. The conversation always seems to center around the misery of the negative person and I hardly get a word in edgewise. The downsmanship can even turn something good into a downer. If I found a great bargain, they never have that kind of luck. If I parked right outside the restaurant entrance, it's not fair that it never happens for them. If I bake banana bread they complain about their crummy stove with uneven heat. It just never ends. But now it has for me. If someone starts the downsmanship game with me, I'm not going to take the bait. If I find myself doing it to someone else, I will make amends and do better next time.

A person engaged in downmanship isn't sharing their story so we can relate to one another - they are sharing their experience to shift the conversation to him or her. It takes all the power out of my experience and negates what's important to me. Big difference. They almost can't wait to get the words out so they prove that my experience was nothing compared to theirs. That person wants the prize for being the most miserable. Well, as of today - you win. You have the most misery, unhappiness and bad luck, the hardest life and I will never have it as hard as you do. Okay? No more contest - I will always be the lucky one, in the right place at the right time, and I'll never have to deal with anything hard or challenging ever again (hmmm, that sounds like a pretty sweet deal, actually). That way we can both stay our own kind of happy.

Monday, November 8, 2010

Day 88 - A Silver Lining in the Gray Clouds

It's a Monday morning and there is no sunshine today. It's cold and damp outside and last night was the first night of day-light savings time, so it was really dark by five. Winter is creeping in and there are places nearby that have already had some snow flurries. For me, this is not a formula for a happy, feeling healthy kind of day. BUT, it's also just a short time until the holiday season begins and I am VERY much into all the festivities. I love having family around and thinking about all the big and little ways I can please them. Our Thanksgiving Day is a wonderful time to think about our many blessings. I am conscious of the energy I expend during this time of year so I have already begun my holiday preparation. There are a couple of bags of gifts hiding in the garage and I we are already planning our family get-togethers.

There's another part of my plan that is important this year. I have to build in time for my Lady Doc visits and to do what I need to do to reserve energy and not push myself to the point of being depleted. There is always something that needs to get done, even during the slower times of the year. A few days out of commission with my fibro nonsense and I can see the impact all around the house. A pile of laundry here, a stack of unread mail there. Clothes that need to go to the cleaners and forms that need to be filled in and mailed back. I might have a suitcase sitting in the bedroom from my last weekend get-away that I haven't had the time or energy to unpack. The dog looks a little raggedy and needs a good brushing and the curtains for the living room need to be hemmed. I have errands to run for my mother and brother in the nursing home and I have to get to the drug store to pick up my meds. The list goes on and it's always there, waiting for my attention. I shudder when I think about what gets added to the list during this season!

I have to be wise. My intention this year is to do everything I can that gives me energy rather than taking it away. An afternoon at our local historical farm is wonderful and I want to spend an afternoon there. We have a gingerbread house display each year and I'm going to that, too. I love holiday music, so there has to be a performance we can attend. As for the practical stuff, no shopping on weekends or in malls but instead I'll frequent little shops that are filled with great fragrances and unusual things. I'll do online grocery shopping and have dinner menu ingredients delivered to my door. Anything that can be done online, I'm on it and if returns have to be made, instead of tucking the box away and then feeling guilty I haven't yet returned it, I'll send it right back. Promise. I want to find happiness in all the little things around me that mean so much and get a dose of happy that I'm sure will contribute to making me feel great - even in the damp and dreary winter.

Sunday, November 7, 2010

Day 87 - Dealing With Illness Is a Tough Thing to Swallow

Nearly two weeks ago I had to cut back on my meds and supplements. My esophagus was not happy with the number of pills I was sliding down my throat . Multiple times a day I was downing a handful and they were working - no side effects, and I was finally organized and in the swing of things. I knew which pill to take at which time of day. Ever since I was a little kid I've had nasty, painful esophageal spasms that would strike out of the blue. Twice they were so relentless and agonizing I wound up in the emergency room sipping lidocaine and popping muscle relaxers. Taking tens of pills each day aggravated that condition and  every meal and every dose of meds created severe pain. My lady doc said to cut back to only the most essential prescriptions, switch to a soft diet, avoid hot or cold liquids and give my esophagus a chance to rest.

It was a good plan. The spasms are much reduced and I have a feeling I'm on the mend. But there is some good news and some bad news. The good news is that my swallowing is much more comfortable. The bad news is that since I'm off most of my meds, my body pain is back with a vengeance. Today was day five waking up with a migraine, my neck aches and my legs feel like I just ran the New York marathon. My skin feels like I have a bad sunburn and my shoulders are in a vice. Today I gave up on trying to heal my esophagus and I went back on the meds that treat my pain. I'd rather have a spasm or two than have my body feel like I've gone a couple of rounds with Mike Tyson.

Side effects are a huge consideration in a choice of meds and supplements. I am thrilled that I have had zero side effects with the way my Lady Doc is handling my meds and the dosages. The only thing I could come close to calling a side effect has nothing to do with my meds - it has to do with the mechanics of swallowing multiple pills at multiple times during the day. It's a life-long problem that just won't seem to go away. An endoscopy last year didn't give me any answers. Maybe it's just one more way fibro visits my body. So here I am with a not so good choice. Do I choose the ability to swallow without pain or my over-all well-being? Well, for today, I chose a break from the pain in my body and I'm glad I did. My neck is feeling a bit better, my legs aren't quite so sore, I don't have a headache and my skin has lost that sun-burned feeling. I ate dinner at a restaurant tonight and I didn't have a single spasm as I swallowed the yummy Italian chicken dish I ordered.

Maybe this isn't going to be a forced choice between one strategy and another. Maybe I can ease my way back into my program and have the best of both worlds. I have to accept that the path toward wellness may have one step forward and two steps back and dealing with fibro may be a tough thing to "swallow". But that's okay. I have a great doc on my team and I have a good head on my shoulders. Tomorrow is another day and I will make the choice that I believe will best promote my overall wellness.

Saturday, November 6, 2010

Day 86 - Do I Dare Show You Who I Really Am?

My daughter is at her Grandmother's funeral today (my ex-husband's mother). She called me to read a lovely poem her Grandma had written about being in love with her husband and the love, pride, devotion and pain she felt waiting for him to return safely to her from the Korean War. My daughter was deeply touched by the poem and wept softly as she finished reading it to me. She then asked if I knew her Grandmother could write so well. I told her that I knew her Grandma to be a very creative woman. I was not surprised that she could write such heart-felt words, especially since she was young and deeply in love. What strikes me about the conversation is that there is probably a whole lot none of us knew about this expressive woman before she died. And now all that is left is to put together the pieces from these little glimpses of her life.

It takes time and a lot of effort to get to know someone well. It takes shared experiences, discussions, quarrels and disagreements, open ears and an open heart. Even when all of those things are present there is no guarantee that we will understand each other or be able to see in another person what they see in themselves. We've all learned to wear a mask that keeps us form feeling too vulnerable. We temper our opinions so as not to seem too bold and hang back when there's an opportunity to share a bit of who we really are. We may want others to see us a certain way and so we say and do things to match an image rather than the reality of who we know ourselves to be. When the masks drop away and we are open to sharing our wants, needs, desires and pain, then others have a chance to see who we really are. But there is safety in wearing a mask, and sometimes it is in our best interest not to show ourselves too freely.

So where is the balance between showing who I am and keeping myself safe as I grow and learn about how to become more of me? How do I build intimacy in relationships without the fear of judgement, ridicule or rejection scaring me away? When my daughter read me the poem I felt sad that it was the first time she had seen it. When any of us write, we put a bit of ourselves out there for the world to see, and that can be a scary thing. I know my daughter would have adored having time to talk with her Grandma about that poem and probably would have asked what else Grandma had written. I am so happy that my daughter got that glimpse into the depth of love her Grandmother once felt for her Grandfather. I also know that as she stands and reads that poem among her family and loved ones, her Grandma will be right there with her. And that's what I have to know about myself, as well. When I share who I am with honesty and authenticity, the people who really love and care about me are standing by, ready to support me in being exactly who I am.

Friday, November 5, 2010

Day 85 - For Dinner, For Coffee, For Life....


I met a friend (from a long time ago) for dinner in the city last night. It was really nice to sit and talk about old times and to also share some stuff that we're grappling with now in our lives. We talked about our kids and our spouses, our work and our frustrations, our families and a bunch of other stuff that just came up in the course of conversation. There is something very comfortable about meeting up with a friend from a former life. I was a kid when we knew each other in college and it's fun to talk about our perceptions of our experience back then. Our lives went in very different directions, but it seemed clear that even after all this time, we still value the same things.

It's nice to know that old friends can pick up the conversation where it left off. We don't have to see each other all the time to stay friends, but it is nice to check in on one another every now and then. I guess different friends meet different needs in us and a friendship will last as long as those needs are met. I also suppose that we have different friendship needs at different times in our lives. It's great to have a Best Friend and those friendships meet all kinds of needs over a long period of time and feel like a real gift. But there are other friendships that are just as important to us and tend to meet a more specific than a general need. Certainly a sense of companionship has to be part of a relationship, but we have so many facets to our personalities and our lives, it's neat if we can develop friendships that kind of fit into those little niches.

Having one kind of a friendship with a person doesn't diminish the importance of another. Besides a best friend we also need a friend to play with, one at work and another in the neighborhood, one from our past and a new friend that we're just getting to know. Or, a friend that sees things our way and a few friends that see things differently. We might want a friend that has kids the same age as our own and a friend with a parent the same age as ours. How about a friend that will laugh with us, but not at us (well, just a little bit as long as it's all in good fun). It's nice to have a buddy shop with and one to go for coffee, one for deep conversation and one that keeps it light, a friend who gets us without explanation and a friend who doesn't get us, but likes us anyway. We might have a friend that's also a relative and another who feels like a sister, or even a brother.  It's neat to have a friend from a different generation than our own and one that always keeps us feeling young. If you're a guy you need a girl friend and if you're a girl you need a guy friend for a gendered point of view. A friend that can sit and be quiet with you is a much a treasure as the one who tells great stories. We just need a friendship that has a common interest or an emotional attachment that keeps us glued together. As a woman, I have always known that my life couldn't feel complete without my friends. I know that time spent with a friend makes me feel connected, cared for and involved and that's exactly what I'd like to offer in return.

Thursday, November 4, 2010

Day 84 - Just a Plain Kind of Tired

This was an awesome day! It was fun being in the city with my team mates and it was a perfect day for walking. It was sunny, just the right autumn temperature and I was dressed perfectly for the weather so I felt comfortable and energized being here. Our meeting place and hotel are really cool and just what you would expect when you think of working in NYC - conference room high-tech, and my hotel room about the size of a large suburban bathroom! I ate yummy food and even stayed with my eating plan. Everything just seemed to fall into place. There are busy days and there are BUSY days! Today a was a whirlwind and I am feeling really good about it. I have a real passion for my work and today was a day to focus on what I love to do with other people who are equally passionate. I love working with my team and we got to talk with some great people who share our enthusiasm for the work we do.

Now the day is behind me and it's time to  do my daily writing. It was such a great day and I put so much energy into it, I don't think I've got much left to work with. This could be a challenge. To say I'm tried would be putting it mildly. I am beat! But, here's the good news, it feels like a plain-old run-of-the-mill anybody-would-feel-this-way kind of exhausted. I love that I am tired just like everyone else at this conference who got ready for being here by packing or traveling, then spent the day meeting new people, processing lots of information, doing a lit bit networking at the end of the meeting and then needing to get something to eat for dinner. I am not alone in this kind of fatigue. Actually, I am happy to feel a normal kind of done! It's not my typical bedtime, but I sure am ready to get into my jammies and crawl into bed. I was smart not to go out to dinner with my colleagues. I didn't need to spend the little bit of energy I have left chatting it up and being on my best behavior at a restaurant. Eating in my room let me relax, check in at home and then eat my dinner quietly. I have some time to get caught up on my messages and get myself organized for day two.

Tomorrow is going to be another long day and I want to be mentally and physically prepared. My colleagues are really supportive and we help each other out whenever we can and that makes a huge difference. When one person needs to hang back, another moves forward and we typically get done whatever we set our minds to. Each of my teammates talked at the end of the day about their tiredness and I could relate. I could understand their fatigue and I was right there with them. Tomorrow we go back and do it all again. If I'm tired tomorrow night - so be it. It's the kind of tired I earned and that's just the way it is for all of us. Today's tiredness doesn't need to be unique to me or related in any way to fibro - I'm tired because I've thrown myself into my life and I got a little worn out. What could be better than that?  Guess it's time to hop into bed and get some sleep. I've got a big day ahead of me.

Wednesday, November 3, 2010

Day 83 - Little Lady Meets Big City

Heading off to NYC today. It's exciting to think about spending some time in the big city learning some good stuff, hanging with my work team and meeting new folks from all around the country. I'm staying near Rockefeller Center which is a really nice part of town. I don't go into the city as much as I used to but I hope this trip starts a trend in that direction. I'm not a huge fan of the crowds, but there isn't anywhere else that has the same energy and I'll be happy to be a part of it.

I used to travel quite a lot for work and I must say I don't miss it. Now I like to take trips with an agenda of fun, exploration, relaxation and good food. One of my goals is to visit all fifty states and I have seen thirty- nine already. I'm going to save those last few for a retirement trip and do the northwest all in one trip. I really appreciate the different cultures around this country and certainly around the world. That's one of the reasons I like NYC - you meet folks from every corner of the globe and we're all doing the same thing - making it through our day and trying to be happy and a part of what's going on around us.

My day is starting very early and I have to be sure to pace myself at this conference. My intention is to be a full participant and get as much out of this experience as I can. I am also going to be sensitive to my own needs and take breaks when I need them, eat healthy food and get a good night's sleep. I'm going to do the best I can with what I have to work with and meet this challenge with curiosity, an open mind and with lots of enthusiasm!

Tuesday, November 2, 2010

Day 82 - If the Shoe Fits - BUY IT!!

I have a friend who orders shoes from a catalog, takes them out the box, puts them on her feet and that's that. Another friend searches high and low for a shoe that will allow her to take a few steps without being in pain. I fall somewhere in the middle. I have a love/hate relationship with shoes. To be clear I am not even talking about spike heels or sexy boots, I am talking about shoes that are presentable enough to wear to work that make me feel both feminine and comfortable. There is no shortage of comfortable (but as far from sexy as a grocery sack) shoes. I don't want to wear them. I try them on and immediately reject them because they make me feel old and dowdy. And really pretty shoes seem to be made of some kind of material guaranteed to make my tootsies ache. So the search is on.
Today I shopped for a pair of shoes to wear to the office. I finally decided on two pair (same style, different color) that I think may just work. I tried on at least fifteen pair and I just can't believe how much a shoe can hurt, even when wearing it for just a short walk across the store. Once I start the process of trying things on, my feet start yelling at me. If a shoe pinches, that pinch stays in my foot - kind of like those old magic slates where you wrote something, lifted the top sheet, and the image disappeared. But underneath, you could see the impression of everything that had been written. It seems my body holds on to a momentary pain and then it continues to radiate in my body. Something as simple as buying shoes gets to be a pain, literally. Then the rest of the stuff that happens in my body when I'm shopping kicks in. If I head out to a store I'm sure to wear clothes will not hurt me. Also,  I leave my coat and purse in the car, because the extra weigh makes my neck and shoulders chime in as well. Who needs that?
One of the things I want to resolve in my life is being able to do little things without it causing big issues. I want to be able to shop if I need to - or want to - and have the energy, stamina and physical strength to do that! I want to go for a walk and not think about my feet, or my shoulders. I want to just forget for a day, a week, a month, a year that I have fibro. I want to choose to buy pretty shoes because I like them, not because my feet decided they would let me. I want to be able to shop for myself or for others and enjoy the experience. For now, it's mostly a run in and get back out proposition. I need a few more things to be ready for this season and I will pace myself and keep in mind that I can do this a little at a time.

Monday, November 1, 2010

Day 81 - I'm Motivated to Learn - But My Brain Sometimes Isn't

I love to sew and I was due for a new machine after struggling by with one that was old and couldn't sew a straight stitch. I found a machine that seemed (no pun intended) to be exactly what I was looking for. Challenge? Sewing machines are now computer operated and I had an entire new set of skills to learn and apply if I was going to be able to make the best of this new and wonderful piece of equipment. So I signed up for a class. There I sat among nine or ten enthusiastic ladies waiting to discover the magical powers of our high-tech machines. I was excited and ready to learn. I was having a good day so I felt ready and able to take this on.
The class began and the instructor talked, a lot. We didn't touch our machines while she went through the directions for each function, we were to listen a pay attention. When she finished her demo, we were supposed to remember what she had just said and perform a series of steps, just the way she had demonstrated. Now granted, it was just a few steps and they were pretty logical, but minute by minute I could feel my brain becoming a jumble of incomprehensible messages, all tumbled and twisted around each other. I concentrated and paid attention. I watched this lady like a hawk, determined to get it right. With every application, it seemed I was the only one who got it wrong! How embarrassing! At one point, we were given three steps to complete, in sequence. I messed up my sequence and jammed my brand new machine. I was publicly reprimanded and felt about two inches tall. I even had to stay after class to have my machine repaired. Later this week I am attending a program for a certification in my field with members from my work team. Have to say, I'm a bit concerned. I don't want a repeat of my sewing machine lessons and I've observed that my experiences as a learner don't always turn out the way I'd like. Lots of times I'm willing, but my mind just glazes over and I get very stuck.
I can usually get through a day's work without too much trouble, so maybe I can think of this conference as a day's work instead of a learning situation. The difference between being at work and in a class as a learner, is that at work, I get to set my own pace and build in brain-breaks when I feel on overload. Meetings have an ebb and flow that includes some side conversations and laughter, which is a great energizer for me. If someone comes into my office wanting a meeting, I  can ask to meet a little while later. That way, if my mental or physical energy is low, I can use one of my little strategies to get it back up again. When I need a boost I can stretch at my desk, get up and get a cool drink of water, eat a snack, close my eyes for a few minutes or take a little relaxation trip in my head. 
I try to manage my work days so I can feel confident and successful. But this week, someone else will be in charge. What if I can't keep up? What if I go into brain fog and can't see my way clear to be an effective learner? What if I embarrass my team? Well, those things may or may not happen. Instead of worrying, I plan to manage my days at this conference using strategies from my typical work day. That way, I am going in with a plan to sustain my energy as an effective learner and not focused on what has gone wrong in the past. I'm looking forward to this week with a new vision of what it will be. I just hope there are some folks there that appreciate my team's sense of humor.