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Wednesday, November 30, 2011

Worldess Wednesday: My Thanksgiving Feast 2011

Get the details and recipes over at The Seated Gardener.


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Tuesday, November 29, 2011

Question of the Week:
What Are Some of Your Comforts and Joys?

I'm back from the long holiday weekend, a weekend which I both enjoyed and overdid it with too much activity.  The over-activity resulted in my quest to get a whole bunch of things done before I go back for round two of carpal tunnel surgery November 30...which is tomorrow!

So before I become inconvenienced by the restricted use of my left hand, I wanted to get these things done:
  • bed linens changed
  • cat litter boxes changed out
  • dogs bathed
  • outdoor holiday lights put up
  • homemade gift for a holiday gift exchange completed and ready for mailing  

The good news is that I got these things all done, several with lots of help from my hubby.  The bad news is that I paying for it now.  And, of course, I can't take my usual non-steroidal anti-inflammatory medications right now since I am in a seven day lockout period leading up to my surgery.

Ho hum!

So my mini flare-up, pre-surgery anxiety and the upcoming holidays have got me feeling quite frazzled.  But then listening to Christmas music over the few past days got me thinking about my comforts and joys.  You know, those little things we do for ourselves that help calm us down, soothe us and create a time-out from our chaotic lives.

Which is a good thing right now, since I could use all the comfort and joy I can get to help me get through the next several days.

One of my favorite go-tos is a warm cup of tea, especially this time of year.  I am really enjoying Taylors of Harrogate Yorkshire and Spiced Christmas teas, as well as Mighty Leaf Tea Company's Lychee Black Tea and Decaf Acai Pomegranate Black Tea.  I sweeten my tea with Truvia brand stevia no-calorie sweetener, which really helps to bring out the fruit flavors in my Might Leaf loose leaf teas.

I also broke down and purchased an electric heated throw blanket.  Fall and Winter weather, even here in sunny Southern California, tends to get me all flared up, so having a nice, warm blanket with gentle heat helps keep the aches and pains at bay.  I've also discovered that my new blanket is quite the pet magnet, attracting both my dogs and cats to come join me for a snooze in the recliner.

So what are some of your comforts and joys?  What do you fall back on when things get hectic and out-of-control?  What little things help nurture you and create an opportunity to pause?

Please share your answers at the Oh My Aches and Pains! Facebook page or here in the comment section.


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Wednesday, November 23, 2011

Reflection on My First Thanksgiving After Cancer Treatment

One of the first holidays I celebrated after finishing my leukemia treatment back in 1988 was Thanksgiving.

Back then, I was in pretty rough shape.  You see, it wasn't just that I was worn out from completing four courses of heavy duty chemotherapy from January to July. I also endured a bout of acute non-A, non-B hepatitis in August, which turned my eyes and skin a sickly shade of yellow, had me puking my guts out for a week solid and then eating baby food for several weeks after that.

It was hard to believe that acute hepatitis could knock me on my ass harder than a week of chemotherapy infusions. Plus the fatigue I experienced while I was recovering from it all was just so devastating.  This was the first time in my life that I felt so wiped out that I could barely do anything. 

So having made it through eight months of cancer treatment and a month-long ordeal with acute hepatitis, I was bound and determined to celebrate my good fortune on Thanksgiving 1988.

Unfortunately, it seemed that no one else in my parents' home was as invested in celebrating and eating a traditional Thanksgiving meal as I was.

So despite my profound fatigue, I volunteered to make the Thanksgiving meal since apparently no one else would.  It was a real struggle.  I spent most of my time sitting at the kitchen table doing all the prep work.  But I wasn't going to let my residual health problems get in the way of a good, home-cooked meal. (By the way, I had Hepatitis C, confirmed by a blood test when it first came out in 1992, so no chance I could give that to them through food preparation, in case you were worried about that.) 

And since I was the one cooking, I decided what everyone else was eating.

One of my favorite cookbooks at that time was Jane Brody's Good Food Book and she had a recipe for Potato Stuffing (follow the link for the recipe.)  Since my energy was quite limited, I decided this was the perfect compromise between making stuffing and making mashed potatoes.  Plus reading the recipe, it sounded quite delicious to me.

Needless to say, everyone who came to the dinner table that evening hated the Potato Stuffing.

But you know what?  I didn't give a turkey's butt end.

I was grateful to have, so far, beaten cancer.  I was grateful I was still around to cook, even if I was physically handicapped by the aftermath of the previous nine months of dealing with a life-threatening illness and its treatment.  (To be accurate, it actually was actually two: I learned much later that the acute hepatitis could have killed me too.)  I came to the table with gratitude in my heart and a new appreciation for my family too.

So if they wanted to be petty and complain that they didn't get the traditional stuffing they wanted, after passing on making or even helping the girl who just had cancer and acute hepatitis make dinner, well then just screw them.

I enjoyed my dinner.  I embraced my second chance at life.  It was just too bad my family was so focused on the Potato Stuffing that they couldn't join me in celebrating my hard-fought personal victory over cancer.  

In the esteemed words of Sandra Boynton, my favorite greeting card illustrator back then, my motto moving from that day forward was "Don't Let The Turkeys Get You Down."



In retrospect, I now know Thanksgiving 1988 was just a preview of coming attractions in regards to my health, or chronic lack thereof.

I've now perfected the art of preparing a small but still traditional Thanksgiving meal while sitting down at the kitchen table.  After all, I have had the last seven chronically awesome years to practice, practice, practice.  And pace.  And rest.  And spread the preparation over several days.  And schedule lots of recovery time afterwards.

Now, when I sit down at the table to eat, I have my ever grateful husband by my side, who is always thrilled when I am able to cook for him, even when the best I can do on Thanksgiving is heat up a pre-made meal from a local restaurant or grocery store. 

You know, I would have made that delicious Potato Stuffing again this year if I hadn't somehow misplaced my Good Food Book cookbook somewhere along the way from 1988 to now.  I bet my hubby would have loved it!  Oh well.  There is always next year...


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Monday, November 21, 2011

Question of the Week:
Getting a Head Start on the Holidays?

Good grief!  It's holiday time again.  You know, that magical time of year where there is too much to do and too little time to get it all done.

Almost makes me want to hide under the covers until after New Year's...

This is also the time of year where the tome Simplify Your Life: 100 Ways to Slow Down and Enjoy the Things That Really Matter by Elaine St. James would really in handy.  Come to think of it, I have a copy of this book somewhere in my house.  Maybe it's time for a refresher course!

Now my personal favorite holiday by far is Thanksgiving.  And I get to celebrate it in a very low-key fashion, with just my husband and our furry kids.  It used to be the holiday we spent with my family, but since my parents passed away and my sibling have scattered, it's just me and the hubs now.

Truth be told, I don't mind.  We can eat what we want, when we want and don't have to get all dressed up (or out of our pajamas) to do it.

I know this kind of holiday isn't possible for some of you because of family obligations.  Or maybe it is and you just haven't considered this option yet. After all, you can see the family on Christmas instead, right?  That's what me and the hubby do.

Either way, it's time to break out the OMA&P! Special Event form and create your plan of tackling Thursday's holiday TODAY if you haven't already.   You may decide to:
  • Spread the cooking out over several days.  
  • Delegate some tasks to others.  
  • Ask guests to bring a food dish with them and have a potluck instead.
  • Purchase a heat-and-eat meal from a local restaurant, grocery store or gourmet food shop.
  • Go out to eat instead (and with this current economy, there are probably reservations still to be had.)
Don't forget to sneak in extra rest where you can and reserve the rest of the holiday weekend for lots of downtime to recover.

You are a brave soul if you decide to participate in all the Black Friday shopping madness.  Although, since many stores will be open Thanksgiving Day, does that make it Black Thursday instead?  I'm doing my shopping online, as usual, because I just won't have the energy to deal with crowds and chaos.

Which brings me back to that book on simplifying your life...





So are you getting a head start on the holidays?  What do you do to make this season less hectic and more enjoyable?  Please share the secrets to your holiday success here or over on the Oh My Aches and Pains! Facebook page.

Happy Thanksgiving to all my chronic friends, wherever you live.


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Wednesday, November 16, 2011

Beyond Pink Ribbons:
What I Did Yesterday To Prevent Breast Cancer

I went hardcore patient yesterday and scheduled an insane number of doctors appointment (two) and medical tests (two.)

Thank goodness my husband came with me all day long too and served as my chauffeur--a task he truly abhors--as well.  We got started at 10:30 a.m.; he was bright-eyed and bushy-tailed and me, well, not so much.  I was praying to get through the day with the insanely small amount of sleep I was able to catch the night before.  What a team we made!

I had no idea that during the course of the day I was going to be given a choice to make a real difference in the fight against breast cancer.

Yes, one of my appointments was for my yearly mammogram.  If you are a well-endowed woman like me, you know that getting your yearly mammogram can be quite uncomfortable.  I always get a little flare-up of my intercostal muscle pain afterwards (that's pain caused by your rib muscles.)  Plus the girls aren't too thrilled about getting squished like that either.  And I mean, they get really flattened...

But this year it was different too.

I discovered that UCLA is participating in a program called the Athena Breast Health Network.  The researchers believe that the key to breast health is in each woman's story and they are asking us to share our health stories with them so they can get closer to true prevention and a true cure for breast cancer.

First, I was given an iPad and asked to fill out a questionnaire that took about 15 minutes.  It probably wouldn't have taken so long if I knew how to use an iPad!  (Yeah, I'm one of those people who don't own or ever use one!)  I left my reading glasses with Robert and I didn't know you could zoom in and make the text bigger with your fingers.  I also could have really used a stylus to tap on the screen to more accurately select my answers.

They asked a lot of questions about the health history of my family and myself.  I don't have any female relatives that I know of who have ever had breast cancer, so perhaps that made the questionnaire easier to complete.  They did ask if anyone in my family had leukemia before the age of 40.  Now that was a red flag for me since I am Miss I Survived Leukemia at the age of 22.  So when I turned my iPad in, I asked the research assistant present if there was an emerging link between the two.  They said no.

I Googled it when I got home and found this article on Medscape: Risk of Second Malignant Neoplasms After Childhood Leukemia and Lymphoma. I am going to follow up with a question to my cancer suvivorship team at the UCLA Livestrong Survivorship Center for Excellence as well.

One of the questions that they asked on the questionnaire was whether you were willing to give the researchers a small sample of saliva or blood.  Of course I said yes.  So when I turned in my iPad I was given a 8 1/2 by 11 laminated sheet of paper to hold that I guess was to signal the staff of my choice.  I sat back down, listened to the utterances of lady next to me as she struggled with using her iPad to answer the questions and then looked around and noticed that I was the only one with that special piece of paper.

Huh?!? I thought to myself.  No one else volunteered to give a sample?

For a split second I almost regretted my decision.  Then I rationalized that, with my crazy medical history, I was probably not the ideal candidate for analysis.  I half expected that my sample might get thrown out based on those facts alone. But after those fleeting thoughts, I decided that since I said yes, I wasn't going to back out.  Especially since no one else appeared to be stepping up and joining me.

I got escorted back into the changing area and shown to a booth so I could get into a gown.  My instructions were to place the opening to the front.  This is, of course, my second least favorite part of getting a mammogram.  The gowns are always too small for my bosoms, so I inevitable have to wear two gowns, one opening in front and one over that opening to the back, to keep the girls covered so there isn't an accidental unveiling before I get to the mammography room.

As I stepped out of the booth, I was almost handed yet another one of those 8 1/2 by 11 special flyers.  I declined it, showing the nurse I already had one.  They must be super excited that I volunteered, I thought to myself.

"Come in here then and let's get your sample," she said with a smile.

Luckily for me, I only had to give a saliva sample.  Not that giving a blood sample would have been horrible.  Heck, I am giving blood samples to the lab at least four times a year and sometimes they are taking up to 6 tubes of blood at a time.  Giving saliva, in comparison, seems like a piece of cake.  In reality, between trying to keep my gown in place and coaxing my chronically dry mouth into producing enough saliva, the experience was a little gawky and ungraceful.  But I managed it.

I asked if they would test my sample for the breast cancer gene and was told no.  Apparently I won't be hearing about any results from the sample I just gave them.  But that's O.K.  I get the satisfaction of knowing I am helping advance medical science...IF they find my sample usable.  

Then it was on to the mammography room and the Selenia digital mammography machine.  It is strange that I find it a bit comforting that something that shares the spelling of my name takes the pictures?  The tech assisting me was the same one from last year.  I filled the awkwardness in the room with chat about how my husband and I bought an indoor electric turkey fryer and would be using it for the first time this Thanksgiving to prepare our bird.

Four views later, I left the room promising to let her know how the turkey turned out when I come back next year.

I headed back to the booth, changed out of the gowns, put my clothes on and headed out.  The whole visit took less than 30 minutes.

Sure, I'm always I little anxious about the results, but they come in the mail a few weeks later.  In the meantime, I'll put on my best Scarlett O'Hara face: I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.

The real difference this time is I got to walk away feeling like, in a very small way, I might be helping one of my 'sisters' prevent or beat breast cancer because I chose to participate in a research study.

I'm not the only one making a difference.  You can participate too!  Simply schedule your next mammogram at one of these participating University of California Medical Centers: UC Davis, UC Irvine, UCLA, UC San Diego or UC San Francisco.  Visit the Athena Breast Health Network website for more information.

Oh, and please consider volunteering to help medical research whenever you are presented an opportunity to do so.


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Monday, November 14, 2011

Developing an Attitude of Gratitude

"Enjoy what you can, endure what you must." 
~ Johann Wolfgang von Goethe


Living in chronic pain and dealing with chronic fatigue are not fun.  Quite frankly, these symptoms inspire a lot of beastly feelings in me.  Gratitude is far removed from how pain and fatigue make me feel.

When Life Becomes Painful

The first few months, or rather the first few years, of my new life with fibromyalgia and other chronic pain disorders were pretty miserable ones.  All I wanted to do is just get better.  All I wanted was to leave the pain and fatigue behind...and I felt frustrated when all my attempts to do just that were fruitless and unsuccessful.

Getting to the point where I accepted that for now pain and fatigue were part of my life was an emotional, difficult process.

Finding a Better Way

But I got there because I just couldn't live in pain all the time.  It was killing me, my mind and spirit, to be focused on it all the time.  I saw the writing on the wall and knew that if I got fixated on my pain, I was heading down a path to a truly miserable place.  A place I didn't want to go...

So as much as it went against everything I was feeling and experiencing in the moment, I started seeking out pleasant moments.

Driven to Distraction

At first my aim was to distract myself from my pain.  So I put together a list of things that I liked doing and could still do despite my pain.  The list was small at first and focused a lot on watching TV, reading books and listening to music.

After a short time these escapes from reality started to work and emotionally I started to feel some relief.  Distraction began to ease my burden.

Then a funny thing happened.  I got to a place where I wanted to do more than just escape.

Distraction was good, don't get me wrong, but I also wanted to figure out how to get more engaged in life again.  I wanted to feel like I was alive and really living my life, not just trying to hide from it.  Not sure how to do this, I stumbled upon a simple way to get me moving forward: I went outside into my backyard.

Reconnecting Through Nature

There truly is something magical about Mother Nature.  There is also something quintessentially life affirming about sunshine, cool breezes, clouds, birds chirping and green plants surrounding you.  Being out in nature really does nourishes the body and soul.

It's also amazing how much goes on in my backyard that I simply wasn't aware of until I started spending some quality time there:
  • I made friends with the birds that visited my yard and discovered so many different species, regulars and migrants, who visited all year long.
  • I was captivated by the clouds floating above and started identifying different shapes and patterns. 
  • I started noticing the moon and its phases, especially on the days when it rose during the daylight hours. 
  • Then I was inspired to start taking pictures of all three, which lead to learning about how to take better digital photographs.
Above all else, there was one thing that really got me engaged with life again.  It was when I learned to reinvent gardening to become fibro-friendly through container gardening.  There is nothing quite like the abundant satisfaction of getting your hands dirty, planting some seeds and watching the miracle of life unfold in front of your very eyes.

Feeling More Grateful

So you see, I have been able to regain a sense of gratitude in my life by focusing on what I like to do, what I can do and those things that bring me pleasure.  Since my humble beginning with distraction, I have gone on to discover many more activities I can participate in that leave me feeling good despite my circumstances and my chronic illness filled life.

Today it is easy to keep a gratitude journal.  With so many small but pleasurable activities and moments in my life, I can honestly write down five things at the end of the day for which I am thankful.

Beating Back the Gratitude Deficit

Most of all, I firmly believe that if you live with chronic anything, you must focus a good portion of your time and energy on things that you enjoy.  This practice is essential to balancing out all the things that chronic illness takes away from you each day.  Chronic illness creates a gratitude deficit that can only be remedied by redoubling your efforts to bring happiness into your life.

You simply can't feel thankful if you don't actively nourish and pamper your mind, body and spirit in ways that can sustain and fulfill you.

Some people might call what I am advocating hedonism, indulgence or luxury, but make no mistake; reconnecting with pleasure when you have chronic illness is purely about survival.  It is a key tool in my chronic pain toolkit that helps me live my best life despite chronic illness.  


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Wednesday, November 9, 2011

Warbling Wednesday:
Sittin' in the Waiting Room & Patient 2946065

I'm doing something a little different today.  Today instead of Wordless Wednesday, I am featuring Warbling Wednesday so I can highlight someone I just discovered who calls herself "The Singing Patient."

I found her while I was checking out some blog posts over at HealingWell.com.  (By the way, they mention me there in this lovely post too.)

So who is The Singing Patient?

Her name is Carla Ulbrich.  Like us, she is a sick chick.  She became ill in 2002, enduring two strokes and kidney failure, as well as anemia, hair loss, weight loss, congestive heart failure, pleurisy, fever, migraines, and fatigue. Yikes!

To cope, she applied her sense of humor and off-center perspective to dealing with her illnesses.  Today she is a touring comical singer-songwriter and a member of the Association for Applied and Therapeutic Humor. Oh, and she is the author of  How Can You NOT Laugh at a Time Like This?: Reclaim Your Health with Humor, Creativity, and Grit.
I am sharing her videos below because she is just so gosh-darn funny! Enjoy!





You can find Carla's CD's, MP3's and book over at Amazon.com.



 


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Monday, November 7, 2011

Question of the Week:
Ever Take Out Your Frustration On Your Significant Other?

Over the weekend I read a great post by the Rheumatoid Arthritis Guy titled 10 Things I’ve Learned From Living With Chronic Illness.  It is a solid article, one that I could totally relate to in so many ways.  But I admit when I got 2/3 of the way through it I started feeling kinda bad...

Here is what triggered that reaction:
7)  No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me.
That is excellent advice.  But I admit that I don't always follow this advice and I'm sort of ashamed to admit this.  I mostly feel bad because it is my husband that gets the brunt of my bad behavior when I go "off the rails."

I hate it when my pain and fatigue turn me into an ugly person.

Thankfully this doesn't happen that often.  Although it would happen even less if I stopped pushing myself to the limits of what I can do and paid a little closer attention to pacing myself better.  And this time of year, with the holidays coming up and the weather making my symptoms worse, is a real challenge for me when it comes to pacing.    

The long and the short of this is that I need to redouble my efforts in trying to make this an operating principle in my life.  Because if you are married or involved in a relationship, you know how easy it is to take things out on your partner.  You don't have to be sick for this to happen!

It behooves us all to remember that our partners aren't our punching bags.  We need to learn mature and respectful ways to deal with our pricklier feelings.  So the next time I want to let him have it, I think I'll work on taking a time out instead.  Then, when I am cooled off, I can decide if I need to be angry at him or not.

Since I have been a bit remiss in this regard, I need to make it a priority to start replenishing the bank of good feelings between us. Maybe I can start by baking him a batch of his favorite cookies and doing one of his chores for him.

I do this for the sake of our marriage and to maintain a good relationship with my spouse.  I also do this because I can see how I'll be increasing my withdrawals from the bank very soon.  I know that the new year is going to bring me many more periods of feeling bad when I start Hepatitis C treatment...and I am going to really need my husband's support to get through it.

So can you relate?  Do you sometimes take your anger and frustration out of the people closest to you too?  Is this something that has gotten worse since you started living with chronic illness?

I'd love to hear your stories and some of the things you do to mend fences with your significant others.  Please feel free to share your thoughts in a comment or over on the Oh My Aches and Pains! Facebook page.


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Thursday, November 3, 2011

Mission 2011:
I Love Twitter





Selena from the blog Oh My Aches and Pains! talks about her experiences connecting with others living with chronic illness on Twitter using the hashtags #fibromyalgia, #fibro, #chronicfatigue, #me/cfs,#chronicpain and #spoonie.



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Wednesday, November 2, 2011

Wordless Wednesday:
Dead Tired

Seriously, I am dead tired.  Can't you see it in my eyes?


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