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Friday, April 30, 2010

Do Good Today (Tomorrow Will Be Too Late!)

"do it today" (12405)Image by ehoyer via Flickr

Never put off until tomorrow what you can do today.
~Thomas Jefferson

So what can you do today?

1) Please vote for the Kanzius Cancer Research Foundation at the Pepsi Refresh Project. They want $250,000 from Pepsi to continue their research on an alternative cancer treatment that targets cancer cells and leaves healthy cells alone. This foundation was profiled on 60 Minutes (see below.)
Today is the very last day to vote and they need to rank first or second to receive the funds. So go click and make a difference in under 1 minute.





2) If you are able, please consider making a donation to my friend Lori's Relay for Life team which benefits the American Cancer Society. Lori is participating in Relay for Life beginning at 7 PM Central time tonight and ending at 6 am tomorrow. Start by sending good thoughts her way as she stays up all night to fight cancer and then donate $10 to her team today to take advantage of a perfect opportunity to perform a random kindness and a senseless act of beauty. I will be making my own $10 donation later today...

My original posts on both these worthy causes are featured in the Related articles by Zemanta box below.

So seize the day and do good. Then find other worthy causes and repeat tomorrow.


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Thursday, April 29, 2010

Another Edition of Random Thoughts

Toilets- 09Apr10, Paris (France)Image by philippe leroyer via Flickr


"You gotta laugh, because if you didn't you'd cry."
~Craig Ferguson

I ordered dog clippers on Amazon.com so I can attempt to give my poodle a hair cut on my own. I am trying this in an effort to save money on grooming bills, which amount to $60 for both dogs every 4 to 6 weeks.

Excited when the package finally arrived, I opened it only to find that they had sent cattle clippers instead of the small animal clippers I ordered.

You know what would have been funnier? If they had sent sheep clippers instead...

Didn't Know THAT Could Happen

Last weekend, just before bed, I went to the bathroom and noticed that my deposit into the lavatory had a slight pink tinge to it. Did I have blood in my urine? was my first thought. Immediately I got worried. Of course, this happened on a Saturday, so if I decided I needed medical attention, I would have to go to the Emergency Room. Making my way back to the bedroom, I debated whether to mention anything to Robert or just wait and see if the same thing happened when I got up the next day.

But with the anxiety eating at me, I decided to tell Robert.

"Uh, didn't you eat beets for dinner?" he asked.

"Yes I did," I replied.

One of my favorite items from the CSA biweekly produce box has been the fresh beets, which I peel, slice and steam in the microwave for 5 to 6 minutes. I made a batch earlier in the day, totaling about 2 to 3 beets, which I ate at both lunch and dinner. Let me tell you, they were delicious.

"Well that is why your pee is pink," he explained.

I didn't believe him. I had never eaten beets before and had them change the color of my elimination. With the computer already put away for the night, I grabbed my smartphone and Googled it. Sure enough, eating beets can make both your urine and feces change color.

You should have seen the electric purple color of the toilet bowl water the next morning...

Free Range

When we leave the house, we secure our dogs in the hallway to keep them out of trouble. The only room that doesn't have a door is the living room, so we secure that entrance into the hallway from that direction with a baby gate. Our cat Ra has learned how to jump the baby gate when it is closed, which is O.K. with us. Our cat Bastet can jump the gate too, but since she isn't a big fan of the dogs, she is content to stay on the dog-free side of the gate.

A few weeks ago, we returned from a grocery store run and, of course, were greeted with the sound of barking when we entered the house. We proceeded to empty the car and put the groceries away in the kitchen. Robert noticed that there was an absence of dog noses poking out from under the kitchen door leading into the hallway.

We entered the hallway and discovered that the dogs were in fact in the living room.

We can only surmise that in our absence, the cat jumped the gate and somehow opened it in the process. The dogs took advantage of the open gate and made a break for the living room. The gate shut behind them (which it is supposed to do) and their they were trapped. Being dogs, they made the best of it by eating all the cats' food and foraging for snacks in their litter boxes.

Needless to say, Bastet was not happy.

Ra now gets locked in the bedroom when we leave to foil any future dog jail break plans.


Isn't life with the Inouyes fun?

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Wednesday, April 28, 2010

OMA&P! featured in the Grand Rounds Blog Carnival


Wow, I am actually part of Grand Rounds, a medical blog carnival with doctors, patients and other health care commentators, oh my! This is very cool (virtual) company indeed. And the post that is featured is Not Feeling Like a Lady in the Doctor's Office, which I have to admit has had me chuckling ever since I posted it on Sunday--just in time to be included in this blog carnival. Pretty good work, in my humble opinion, considering I was totally stumped about what to write when I first read that the theme for this edition was ladylike.

Here is what Jenni at ChronicBabe.com, the host for this edition of Grand Rounds, had to say about my post:

Let's Get Introspective

Selena of Oh My Aches and Pains! ponders the health care system, and how it's a lot like dating...and what it means to feel less than ladylike at the doctor's office.


So head on over to Grand Rounds Vol. 6 No. 31: So ladylike! and read all the featured posts. Be sure to leave these bloggers some nice comments too. Thanks to Jenni for including me.


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Tuesday, April 27, 2010

Help Me Help A Fellow Cancer Survivor Do Good

Relay For LifeImage by Esther17 via Flickr


I always enjoy meeting other cancer survivors. Being a cancer survivor means you are a member of a pretty exclusive club, one that is filled with friendly people that always welcome newcomers. Having a life-threatening encounter with cancer has brought us all together and created a very interesting 'family.'

So let me introduce you to my newest 'relative': Lori.

Now Lori and I have been Facebook friends for a while, sparked by our mutual interests in farming and pets. But last week I found out she was a cancer survivor when she commented on my blog post Vote to Change How Cancer Is Treated
posted on Facebook through Networked Blogs. She mentioned that Relay for Life was also a great cause deserving of time and donations. So I took a trip to her profile page and found that on a wall post she made about Relay for Life she disclosed that she was a cancer survivor too.

For those not familiar with Relay for Life, it is an overnight event that raises money for the American Cancer Society. On the night of the event, volunteers come together at a local running track with sleeping bags and tents in hand. They work together as relay teams of eight to 15 persons, keeping one person walking around the track at all times all through the night.

Here is Lori's wall post that describes the Relay for Life experience:

Cancer does not stop at nighttime: Relay for Life start at dusk and ends the next morning. The light and darkness of the day and night parallel the experiences of the cancer patient undergoing treatment.
  • The relay begins at sunset which symbolizes the time the person is diagnosed with cancer.
  • As the evening progresses, it gets colder and darker--this represents the patients struggle as they endure the emotions of being a cancer patient.
  • The time between 1 to 2 am represents the cancer patient starts treatment. They become exhausted, some sick, not wanting to go on, possibly wanting to give up. As a participant in the relay, you have been walking and feel much the same way. Like the cancer patient, you cannot give up.
  • The time around 4 to 5 am symbolizes the completion of treatment for the cancer patient. Once again, they are tired, but they know they will make it.
  • The sun rising represents the end of treatment for the cancer patient. They see the light that life will go on. The morning light...
Because Lori is a cancer survivor, she and fellow survivors have the honor of getting the relay started by walking the first lap together.

Please visit Lori's online Relay for Life personal page and surprise her with a donation of $10 or more towards her fundraising goal of $300. As Lori says,
"I Relay because I am a cancer survivor and I want to see a end to cancer during my lifetime. I want everyone to know we can beat this and survive. Relay gives me the unique opportunity to celebrate the lives of those who have battled cancer, remember loved ones lost, and support the American Cancer Society’s lifesaving mission by fighting back against a disease that has already taken too much. Please support my efforts to fight back against cancer by making a donation or joining my Relay For Life® team."
Lori participates in Relay for Life this Friday, April 30. Please support her if you can and sending healing thoughts her way this Friday evening as she fights to end cancer.
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Sunday, April 25, 2010

Not Feeling Like a Lady in the Doctor's Office

Doctor Office 2Image by Subconsci Productions via Flickr


When Jenni at ChronicBabe announced that the theme for the upcoming Grand Rounds Blog carnival was ladylike, I got a case of blogger's block. The first word that came into my mind when I read the word ladylike was dating. Not exactly a topic fit for a medical blog carnival until I realized that navigating the health care system is a lot like dating. Well, that and acknowledging the fact the I don't feel much like a lady when I am in the doctor's office.

Here are some of the ways the health care system treats me less than ladylike:


Getting to Know You



I get it that the best doctors are booked up and busy. So I go with the flow when I have to be on a waiting list or fill out gobs of paperwork just to get in to see the doctor. But lately I've encountered more doctors in Los Angeles who ask for payment up front or ask patients to pay a yearly retainer fee because they have converted their practices to something called "concierge medicine."

Really?



Look, if you don't have time to see me, how about just referring me to a colleague. Better yet, how about adding an associate to your practice to handle the excess patient load. While I agree with you that the health insurance system leaves a lot to be desired, asking me to pay up front feels like being asked on a dinner date and then being told you "left your wallet at home." Concierge medicine makes it look like the only thing you care about is money, in which case I'm not really sure I want to see you, even if you are all that and a bag of gold coins.

Seeing Each Other



I saw one doctor for over a year and a half, and I honestly can't tell you what he did for me during that time. I, on the other hand, can tell you that each time I came in, I noticed he had more hair on his head. I met some of his other patients through a community fibromyalgia support group and they shared the same opinion: seeing this doctor was a waste of time and seemed to only serve the purpose of paying for his membership to the Hair Club for Men. After that conversation, I decided to stop seeing him.

This same doctor's staff hassled me every time I came into the office about my co-pay. I explained, over and over, that if they billed both my husband's employer sponsored health insurance and Medicare, Medicare would pay my co-pay. I advised them of this in person. I apprised them of this over the phone. I guess they would rather spend money sending me a bill, month after month, that I refuse to pay instead of just sending a claim to Medicare so that they can get paid.



I guess those hair plugs must really be expensive.

Sharing and Caring



For years, ever since the 1990s, I explained to my primary care doctor that I was having these episodes of dizziness, rapid heart rate, shortness of breath, trembling and sweating. The attacks came on suddenly in places like the grocery store or woke me up in the middle of the night. When he asked if I was having panic attacks I said, No, they don't feel like panic attacks. After I got diagnosed with type 2 diabetes in 1999, I thought my symptoms seemed to fit hypoglycemia, although when I tested my blood sugar during these episodes it wasn't really low. As the symptoms became more frequent and disruptive, my doctor talked about vagus nerve problems and sending me for a tilt table test, but ultimately kept coming back to anxiety and panic attacks despite my reports to the contrary.

Then I tripped and fell and subsequently developed fibromyalgia. Did he refer me to a rheumatologist or pain specialist? No, my doctor said I wouldn't get better if I didn't take an antidepressant. At that point, I decided it was time to see someone else.


I finally got my answer in 2007, a diagnosis that truly fit my symptoms: dysautonomia secondary to the chemotherapy I received to treat leukemia in 1988. Turns out, taking a beta blocker each day really helps to manage the symptoms. As for getting better, under the care of fibromyalgia specialist I have tried just about every medication used to treat fibromyalgia, both FDA approved and off-label, and none have made a difference. That includes antidepressants, just in case you were wondering.

Getting My Clothes Off



It feels almost cliche to mention how ill-fitting hospital gowns are. Sure, there is the lovely posterior exposure, but being well-endowed in the bosom, I struggle to find a gown big enough to cover the girls and my behind. So when I am instructed to take my clothes off and put on a gown, I always try to grab two to cover the front and back. This strategy works everywhere but my gynecologist's office, where the hopelessly small paper top and bottom drape make me think that the better choice is to just sit on the exam table naked waiting for the doctor to come in.

My most embarrassing moment happened during my cancer treatment in 1988. I developed an anal fissure that became infected while I was hospitalized. Every day, a parade of doctors came into my room to inspect the fissure, asking me to get on my hands and knees on my hospital bed and present my tush for inspection. It is only in retrospect that I realized that I willingly flashed a view of my female anatomy to a co-ed group of doctors on a daily basis for several weeks.



Maybe I should have worn underwear with Porn Star written across my butt.

Breaking Up

It's sad, but true--not all the relationships with my doctors work out. It's easier when I decide to move on because I can plan the transition of my care to someone else, interviewing other doctors to take their place. It's much harder when the doctor dumps me. I admit it's hard to feel good about myself when an award winning specialist recognized for outstanding patient care tells me there is nothing more he can do for me and would rather not see me again.



It's probably too much to ask for you to be honest about why you are dumping me. It took some time, but I figured out it has less to do with me and more to do with your frustration when prescribed treatments don't work or your exasperation when it seems like there are no more options to try. I get it; you are only human. But if you have to dump me, could you at least give me some referrals to colleagues and transfer my medical records to someone who can pick up where you left off?

So you see, there are many ways in which the health care system doesn't really treat me like a lady. But I'm not waiting around or holding my breath for the system to change. When I was dating, I learned that you have to kiss a lot of frogs to find your prince. In the health care system, I've learned you need to give each new doctor and treatment modality a trial run and be willing to stop and move on when things don't work out.


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Friday, April 23, 2010

I Am a Fabulous Sugar Doll Blogger


I am so honored to receive the The Fabulous Sugar Doll Blogger Award from Dot and FibroMom at Fibroworld. I love their blog, especially Dot's hippo cartoons, and I am touched that they find my blog interesting and enjoyable too. Thank you so much Dot and FibroMom!

In accepting the Sugar Doll Award award, I agree to list 10 things you may not know about me and then pass the award onto fellow bloggers that I love to read.
  1. I was a member of the YMCA swim team in grade school and breaststroke was my specialty.
  2. I participated in Girl Scouting, from Brownies to Seniors, and received the First Class Award (the highest award given in 1978) as a Cadette Girl Scout when I was in 8th grade.
  3. I excelled at selling Girl Scout cookies and YMCA Christmas tree tickets door-to-door and won a ten speed bike and a portable black and white TV for being a top salesperson.
  4. I developed a very successful babysitting business in junior high and high school, which kept me busy earning money almost every weekend.
  5. I hiked to the bottom of the Grand Canyon and back up again as a teenager with my family.
  6. I paid my own way through college and graduate school at UCLA.
  7. I was a paid employee of the 1984 Los Angeles Olympic Organizing Committee in the Accreditation Department and had a wonderful time working for them. Our motto was: We don't need no stinking badges!
  8. I traveled alone to Greece and Turkey the summer of 1990 to celebrate receiving my Bachelor's degree in Kinesiology.
  9. I bought my home in 1994 before I started dating my husband, thus proving that women who own houses attract spouses.
  10. I answered a question correctly at Sea World San Diego and was invited to go behind the scenes at the penguin enclosure where I got to pet a penguin.
I've selected five recipients to bestow with this blogging honor and so, without further ado, The Fabulous Sugar Doll Blogger Award goes to...

(drum roll please)


Please check out FibroWorld and my five fabulous award winners. Thanks again to Dot and FibroMom for giving me my very first blogging award.

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Thursday, April 22, 2010

Vote to Change How Cancer Is Treated

Fuck cancerImage by hoodiefanatic via Flickr


Yesterday I was checking my Facebook feed when I saw this post from a friend:

Develop an alternative cancer treatment that has no side effects | Pepsi Refresh Everything
www.refresheverything.com
Vote for the most refreshing ideas to win Pepsi Refresh Project grants for Health

Being a 22 year cancer survivor, of course I had to check this out.

Because I have lived so long after my leukemia diagnosis in 1988, I know first hand that surviving cancer is really just half the battle. Think about it like this: having cancer is like climbing Mount Everest. It is a grueling struggle to get to the top of the mountain, which is akin to cancer treatment. Once you get to the top, the view is exhilarating and awe-inspiring, like finding out your cancer is in remission. But then, you have to make it all the way back down the mountain, which is just as treacherous and dangerous as getting to the top. The journey back down the mountain describes life for many cancer survivors who are living with late and long term effects from their cancer treatment.

So what are cancer treatment late and long term effects? In my case, the chemotherapy drugs I received damaged my autonomic nervous system, caused infertility and put me at risk for getting leukemia again and having heart problems. In addition, the numerous blood transfusions I received in 1988 gave me Hepatitis C. The Children's Oncology Group has put together a comprehensive list of cancer treatment late and long term effects based on the type of cancer and the treatment received, which you can read by clicking here: Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.

But let's be honest. The odds of me surviving my cancer were only 33% in 1988. It is a miracle I am still alive. Back then, getting the upper hand on cancer was the goal of treatment and no one really worried about late and long term effects because so few people lived for decades past their cancer diagnosis.

I am a member of the first generation of cancer survivors who beat cancer and are here to tell you about it.

Now that treating and curing cancer is a more achievable goal, I say it is time to work on eliminating cancer treatment late and long term effects. I want to make sure that the next generation of cancer survivors does not have to live with this double edged sword illness of illness and disability from cancer and cancer treatments. So when I found this opportunity for all of you to help me achieve this goal, well, you know I had to write about it.

The Kanzius Cancer Research Foundation is working to develop a non-invasive cancer treatment that kills cancer cells and spares healthy cells. Based on the work of John Kanzius, radio wave technology has been found to be effective in targeting and destroying pancreatic, liver, breast, prostate, colon, lung and leukemic cancers. The foundation anticipates FDA approval this year to build a larger device capable of treating humans and beginning pre-clinical testing. Based on this time line, they anticipate beginning Phase 1 human clinical trials in 2012.

Your vote at the Pepsi Refresh Project can help the Kanzius Cancer Research Foundation obtain $250,000 in needed funding. With the money, the foundation plans to hire two full-time experts, a molecular biologist and a physicist, to support ongoing research and clinical trials. They will also use the funds to support ongoing global fundraising efforts to support their ongoing research.

Please help me improve the health of cancer survivors by voting for the Kanzius Cancer Research Foundation at the Pepsi Refresh Project. You can cast your vote daily through April 30th. The foundation needs to place 1st or 2nd in its funding category in order to receive funds and it is currently in 3rd place. Let's help them move up in the rankings and achieve their goal!





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Wednesday, April 21, 2010

Check Me Out in the ChronicBabe Blog Carnival

chronic babe buttonsImage by jima via Flickr


It's time again for another edition of the ChronicBabe.com Blog Carnival. Click here ChronicBabe Blog Carnival #2: Love, Illness and Other Confusing Things to get the ChronicBabe take on love, sex, relationships and chronic illness.

Be sure to check out the introduction to my post under the heading
First came love, then came marriage: Stories of being wed to chronic illness:

Selena’s husband is not so much confused by her illness as he is doggedly determined not to allow it to turn her into a grumpy mess. He is defiant in the face of the alien that has slipped into her body and lashes out at him. Check it out He Wants Me Back...And So Do I at her blog, Oh My Aches and Pains!


I hope you enjoy this new blog carnival and consider contributing to it as well. The next edition is on May 4th and the theme is Learning to Live with Pain. If you want to participate, send your name (as you would like it to appear), the name of your blog, the name of your post, and a 1-2 sentence description of the post to chronicbabe@gmail.com. The submission deadline is Sunday April 2th at 10 PM Central (Chicago) time.

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Tuesday, April 20, 2010

Why Can't Everything Be Like the Hardware Store?

Interior, Tweedy & Popp Hardware Store, 1916 N...Image via Wikipedia


I'm determined to get an early start this year on my container vegetable garden, which means I've made a couple of trips to the hardware store to get supplies. In addition to getting things for my container garden, I found some bolts and nuts that will fix the stairs for my dogs. I also found some puncture resistant gloves for gardening, windshield washer fluid, seed starter kits, a rubber tote bucket and a collapsible mesh laundry tote. It's amazing how many useful things there are on the shelves of a hardware store.

That got me thinking about all the ways the hardware store makes my life better.

For starters, just think of the messages hardware stores tell us, like You can do it! and Do-it-yourself! And these aren't empty promises either. After all, the staff at the hardware store will help you get it done, with friendly advice and do-it-yourself classes and books. You can literally go into a hardware store and ask someone, "How can I fix this?" and they will direct you to the tools, supplies and knowledge you need to get the job done. Some places will even load your purchases into you car for you. All of this seems pretty amazing!

Plus consider all the things you can do after a visit to the hardware store. You can build, grow, improve, repair, remodel and replace things in and around your home. You leave armed to accomplish everything from the ordinary to the extraordinary.

Best of all, the hardware store is full of solutions. If you have a problem, the hardware store has a way to solve it. That doesn't mean everything can be fixed, but if it can't be fixed they can help you replace your broken item. The only reason you'll have to go somewhere else is if the part you need is not in stock.

Imagine if all the people and places you visited in your life offered everything the hardware store did: the positive messages, encouragement, support, tools, knowledge and an endless supply of solutions for your problems. Now that would be awesome. Which leaves me with only one question--why can't everything in life be more like the hardware store?

What do you think? You can let me know by leaving a comment.

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Monday, April 19, 2010

One Damn Thing Over and Over

Give me a path to go into your heartImage by Vardhana via Flickr

It’s not true that life is one damn thing after another; it’s one damn thing over and over.


~Edna St. Vincent Millay

Robert reconnected with a high school friend over the weekend. They spent a good two hours chatting over AIM. From their 'conversation' I learned that his friend is taking care of her mother who has dementia. Immediately my heart went out to her. Then she shared her troubles with her siblings and I found myself nodding my head and saying to myself,
Yup, that sounds familiar. The conversation made me think that she and I are living life from a very similar script.

I often wonder about life and how it works. When I run into people dealing with the same issues as me, I ask myself: Is this my cue to help? Is this a sign of encouragement from the universe that I am not alone in my struggles? Is this proof that the experience of life is really not so different for all us human beings?

All these questions then got me wondering if life is a series of problems or really just one problem dressed up in different clothes? That got me thinking about the quote at the top of this blog post. Is life just "one damn thing over and over" like Edna says?

After considerable thought I have to say, Yes, life is one damn thing over and over and that one damn thing is change.

With each tick of the clock, everything and everyone in the world changes. Nothing stays that same, including ourselves. Even if we think we don't change, the truth is all the changes around us impact us and have the effect of changing us. Life is change, therefore the one task we are all challenged to master is adapting to change. Which means life is not really a series of problems, but a series of opportunities to change.

After disclosing her current set of circumstances, Robert's friend asked if she had overwhelmed him with all her current news. I guess she felt like she had shared a lot of unpleasant things that might have overwhelmed him, turned him off or made him tune out. Robert said no.

What his friend doesn't realize is that he lives with me, the Queen of Change. He's already lived through me taking care of my Dad with Alzheimer's and me dealing with my siblings. He's living with me and my life with chronic illness. Since my life has always been on the fast track of change, being with me has actually improved his ability to adapt to change. That's not to say that he doesn't still view all these changes as one damn thing after another,
but I know he won't let change get in his way of being a friend.

Yes, I'm lucky to have him as my spouse and she is lucky to have him as a friend. And together, we will all just roll with the damn changes.


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Thursday, April 15, 2010

My Community: Thoughts About Carrots and Sticks

This is Arnott:  He's an Author and Homeless i...Image by cobalt123 via Flickr


I read an email yesterday evening from the City Councilman that represents our area. He explained his stance on a controversial plan intended to both help the homeless and reduce the number of homeless sleeping in cars and motor homes parked on residential streets at night. In his email, he literally used the words "carrot and stick" to describe the two pronged approach of no parking between 2 a.m. and 5 a.m. for non-residents, restrictions on RV parking in residential areas and offering the homeless living in their vehicles safe parking areas where they can legally park as long as they agree to social services that help get them off the street and into housing.

Of course the only part of this plan currently in play is the "stick", i.e. no parking between 2 a.m. and 5 a.m. for non-residents and restrictions on RV parking in residential areas.

But really, the thing that struck me the most was his use, or rather misuse, of the term "carrot and stick." Doesn't the saying go something like "carrot on a stick" and isn't it a metaphor for getting someone to do something they don't necessary want to do by luring them with a tempting incentive? You know, like getting a stubborn donkey to walk by dangling a carrot in front of it, just out of reach of its mouth. Instead he twists the meaning, implying that society need to both punish and reward certain behaviors in order to get the homeless to stop being a parking nuisance and start getting themselves back into housing and their cars into garages.

It just seems odd and wrong to talk about the homeless using carrots and sticks. Although, I guess I should be honest and admit that this whole, weird way to talk about a problem truly does reflect the somewhat schizophrenic way our society approaches social problems. On the one hand, we believe that people should just get their act together and straighten themselves out on their own. On the other hand, those down and out are sometimes seen as victims that need our help. In many ways, our approach does resemble luring people with carrots and then hitting them across the knuckles with a stick and vice versa.

I believe the problem of homelessness is complex and multifaceted. I also believe that offering or forcing people to participate in services designed to help, i.e. get them off the street, may or may not solve the problem. I think that the previously housed homeless who sleep in their cars because they lost their jobs and their homes are more likely to get back on their feet with some assistance. The chronically homeless who have now discovered the benefits of sleeping in a vehicles will probably be more reluctant to give up this way of life. The Councilman's plan is to get all these (and more) homeless groups back into housing. It's an honorable goal, but one not easily obtained.

While some people will only change to avoid negative consequences and other people will only change if coaxed and rewarded to do so, I think most of us fall somewhere between these two extremes. Acknowledging this fact makes me think that talking about public policy using the words "carrot and stick" grossly oversimplifies both the problem and the solution. Or perhaps it just goes to show that a "housed" politician truly can not relate to his "homeless" constituents.

What do you think?
Are you more of a carrot or stick kind of person? Do you have a better idea about how to help the homeless and address the concerns of the housed? Leave me a comment and share your thoughts.
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Wednesday, April 14, 2010

The Elephant in My Bedroom

Creature from CPAP LagoonImage by >>>WonderMike<<< via Flickr

It seems like there are so many conditions associated with fibromyalgia, but there is only one that turns me into an elephant with a 6 foot long trunk each night. I'm talking about sleep apnea and my nightly bedtime companion (besides my hubby of course): my CPAP machine. My CPAP mask, the ResMed Mirage Swift LT for Her, sort of looks like the mask WonderMike is wearing in the picture above, which connects via a 6 foot hose to my Respironics REMstar Auto M series CPAP machine. (However I, unlike WonderMike, will not be modeling it for you.)

I've been thinking about my whole sleep apnea situation more because of the pollen explosion that has gripped the nation this Spring, including right here in Los Angeles. I saw my family medicine doctor yesterday, who explained that the alternating cold-warm-cold-warm weather cycle seems to be making all the trees, plants, flowers and grasses release even more pollen than usual. This whole pollen thing got me asking for allergy medications, medications I don't usually use on a regular basis. But over the past few days my ears have been all stuffed up, which in turn makes me feel nauseous and dizzy, like I have vertigo. I can deal with the stuffy nose I often get from my CPAP, but the stuffed up ears is where I draw the line.

Yeah, using a CPAP has a whole bundle of nose, congestion and other problems. All that air getting blown up my nose all night can dry me out or get me all stuffed up, depending on the weather and the season. Using a prescription nasal spray can help with this, but I just don't like adding another medication to the mix on a regular basis. Fortunately for me, I discovered this gem of a website that provides a comprehensive list of tricks that helped me learn to adapt and make CPAP therapy work for me without additional medications: The alt.support.sleep-disorder Website CPAP Hints & Tips. Rather than repeat all that good information here, I'll let you head over to their website to take it all in.

The real bummer with all of this is that, with near 100% compliance, I still can't seem to get a good night's sleep, probably because sleep apnea isn't the only sleep disorder fibromyalgia has given me. I've talked a bit about my delayed phase sleep disorder here and even mentioned my inability to get deep, stage 4 sleep. I continue to have an overall inability to get good, restorative sleep every night. That said, it is also to the point where I can not sleep without my CPAP, despite it's awkward, elephant-like appearance and constant maintenance. I know this because my sleep is made worse on the night's I am unable to use it due to the occasional cold or sinus infection.

That said, I'm off to bed, elephant trunk and all. I feel like I should be trying to learn how to trumpet like an elephant to say goodnight to you too. Oh well, here's to sweet dreams of grasslands, blue sky, strong breezes and the warmth and safety of the herd.


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Tuesday, April 13, 2010

Blast From My Past: My Very First Blog Post

Happy New Year World (2010)Image by Lel4nd via Flickr

This is the very first blog post I ever wrote on AOL Journals, back on January 2, 2006. It's interesting to look back four years and see where I was, two years into my life with chronic illnesses.

___________________________________________

HAPPY NEW YEAR ?!?!?



Yes, I am hanging in there despite all my medical problems.


To date, I have been diagnosed with fibromyalgia, chronic fatigue syndrome, arthritis of my neck and low back (degenerative disc disease), cervical radiculopathy (a fancy way of saying that the pain travels from my neck, down my arms and into my hands), carpal tunnel syndrome, chronic myofascial pain, chronic headaches, atypical migraines and chronic low grade fever.



Whew! All this from tripping and falling in October 2004. Who knew you could hurt yourself so much just from tripping and falling?!?! Although I do suspect that the trip- and-fall was just "the straw that broke the camel's back".

For a girl who considered herself healthy, I already had several health problems before October 2004: Hepatitis C from blood transfusions in 1988, Type 2 diabetes (related to the Hep C?) and a history of acute leukemia that has been in remission and "cured" for almost 18 years now.

What do I do with all my time?



I've been spending a lot of time reading and watching TV/movies. When my arms and hands don't ache too much, I check my e-mails and search the Internet researching my medical conditions. I keep in touch with family and friends via telephone and e-mail mostly...



I was able to teach myself knitting for a while, but had to stop when my arm pain/carpal tunnel symptoms got worse after the cervical epidural injection wore off in September.

Between all the fatigue and pain, it's really hard to do much around the house or go out and run errands.

My sister has been an angel... she has been my "chauffeur" and takes me to my doctors appointments and runs errands with and for me when she has the time. I don't know what I would do without her.

I'm doing a home meal delivery service because shopping and cooking is just to much for me to do right now.

I have been seen by way too many doctors and I am starting to feel like that elephant in the parable about the blind men.

Since I have an illness (fibromyalgia) that the medical establishment doesn't understand very well, I have been left to try to put the pieces together and make some decision about how I should proceed with treatment.



There is emerging some evidence that my Hep C may be involved in this whole picture. As my liver specialist recently told me, "Some people with Hep C have aches and pains. It's hard to say if that is the case with you, but if you treat the Hep C and the aches and pains are related to Hep C, they will get better with treatment." So I am seriously considering starting interferon and ribaviran treatment in this New Year...

The pain doctor wants me to have some deep injections to see if he can treat the nerves in my neck and low back and stop some of the pain. The bad part of deep injections is that they strap you down on the procedure table face down and sedate you for the procedure... I must not be a very good patient because the whole thing just makes me anxious!



Believe me, I wish I was feeling better. I'd settle for every day being a "bad day" at work if I could just have no more pain and fatigue days.

Everything that I have been reading says that fibromyalgia gets better with time ... how much time it will take, I don't know.



___________________________________________



Forward to today and some things have changed. For starters, I no longer have my sister's help and the home delivered meals became too expensive so I stopped getting them. Instead, I've figured out some work-arounds for getting to appointments and getting help with errands. I've also discovered some fibro-friendly methods of meal preparation like using a crockpot.

I tried Hepatitis C treatment in 2007 and was unable to tolerate it. I stopped getting the deep injections for pain because they weren't working for me. These and many more experiences taught me to give each new medical treatment a time-limited trial period, after which I decide whether to continue based on the outcome of the trial. Unfortunately, though I have tried many things, few have helped.



I have decided to stop waiting to get better. It's not that I would not welcome it, but rather an acknowledgment that this is not the path I am on right now. I discovered that expending energy waiting to get better interfered with my ability to enjoy today. I've learned to have some fun each day and make more activities fibro-friendly so I can do more and enjoy more of what life currently offers me. I've decided to focus on what I can do in the here and now and I try to leave my concerns about the future and what it has in store for me in the care of the universe.

So I guess I no longer want to bargain a lifetime of "bad days" at work for a life free from chronic pain and fatigue.



Yes, I am still hanging in there despite multiple chronic illnesses. But on most days, I hope I get to do more than just "hang in there." That's why I've also decided that every New Year I get to celebrate is happy just because I get to experience it.

I guess you could say that chronic illness has helped me develop an attitude of gratitude.

Looks like I've come a long way since January 2006!
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Monday, April 12, 2010

Comfort Food: Crockpot Turkey Veggie Mac and Cheese

Shredded cheeseImage by quinn.anya via Flickr


It's time to put the finishing touch on the 2009 tax return. Time is running out as April 15th is this Thursday (yikes!). Needless to say, we got off to a late start by purchasing the tax software in the middle of March. We itemized our deductions and the annual tax-deductible receipt hunt had been in full swing over the last few days

With all the frustrations and stresses of tax-time, a nice crockpot full of comfort food is much needed this week.

This is my version of bliss, yummy mac and cheese hiding good-for-you veggies and some balancing protein too. I like the combination of the broccoli and greens, as these vegetables happen to be in the same family (Brassicaceae, also called Cruciferae, which are cruciferous vegetables) and their tastes compliment each other and the cream of broccoli soup based. Plus hardy greens work well in the crockpot, retaining both their shape and color during slow cooking.

For the two of us, this recipe produced several days of equally yummy, don't last very long leftovers.

Turkey, Veggie Mac and Cheese
serves 6

  • non-stick cooking spray
  • 3 cups chicken broth
  • 1 can (10 ounce) cream of broccoli soup
  • 1 cup evaporated milk
  • 1 packet (1.5 ounce) four cheese sauce mix
  • 12 ounces dried elbow macaroni (small size)
  • 2 cups shredded sharp cheddar cheese
  • 1 1/4 pounds ground turkey
  • 4 cups fresh broccoli florets
  • 1/2 cup frozen bell pepper strips
  • 1/2 cup frozen chopped onions
  • 1 tablespoon chopped garlic
  • 4 to 6 cups fresh greens (spinach, kale, mustard greens, etc.) chopped into bite size pieces

1. Coat a 5 quart slow cooker liner with non-stick cooking spray.
2. Pour the chicken broth, cream of broccoli soup, evaporated milk and four cheese sauce mix into the slow cooker liner and whisk together until smooth. Add the elbow macaroni and shredded cheese and stir until combined.
3. In a microwave-safe 2 quart casserole dish place the ground turkey. Cover with a lid and microwave on HIGH for 5 to 6 minutes until the meat is cooked and the juices run clear. Drain off excess fat and break meat into clumps. Add the broccoli, pepper strips, onion and garlic and stir until combined.
4. Using a microwave vegetable steamer, cook the chopped greens for 2 to 2 1/2 minutes until wilted. Add to the meat mixture and stir to combine. Pour the meat and vegetable mixture into the slow cooker liner and stir to combine.
5. Place the liner into the slow cooker and cook on LOW for 3 1/2 to 4 1/2 hours, until macaroni is tender.

VARIATIONS:
  • Try using cheddar cheese soup in place of the cream of broccoli for a stronger cheese flavor.
  • Omit the ground turkey and add vegetarian meat crumbles for a vegetarian twist on this dish.
  • No greens? Add some of your other favorite veggies, like carrot and/or zucchini circles, green beans, sugar snap peas, diced tomatoes, etc.
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Saturday, April 10, 2010

One Sentence--A Sign of Change?


I hate watching commercials on TV for fibromylagia drugs. For starters, none of the women in the ads look like they have fibromyalgia. Plus, do you see all the things these women are doing? The latest one is working (standing up no less) in a bakery, while others have been giving a lecture in front of college students, spending all day touring New Orleans on foot with her husband and the final one was seen gardening, handwriting in her journal and creating art in her studio, all in one day. Let's see, could I do those things? No, no, no to the first three and handwriting is definitely out too. I can do some gardening and art and crafts, but not on the same day. Definitely not arts and crafts like painting that require a lot of fine motor skills over extended periods of time. So I can do two (modified) things out of the six things. That TV portrayed level of activity is not a great representation of my life with fibromyalgia.

These commercials also give the impression that these drugs can produce marked improvements in functioning, almost to the point where someone with fibromyalgia could return to their normal, pre-fibro life. I wouldn't know, because none of these drugs helped me. They only gave me side-effects. Other people I know with fibromyalgia aren't achieving this level of improvement while they are on these medications. I can only conclude that since there is a whole spectrum of severity of fibromyalgia symptoms, perhaps these women on TV started with less severe symptoms.

After months and months of seeing these ads, I almost always tune them out when I hear them. That is until I heard something the other day that caught my attention. I heard just one sentence:
Fibromyalgia is thought to be the result of overactive nerves that cause chronic widespread pain.

This statement is not news to me, but to hear it in a TV commercial? Granted, the medication advertised works on nerves, which is probably why this statement is included. But is it possible that these TV commercials will educate anyone who watches them about the true cause of fibromyalgia pain?

According to the
National Fibromyalgia Research Foundation:
While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of Fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.


Translated, this is science-speak for:
fibromyalgia is a neurological disorder in which pain signals from the body are amplified by the brain, causing the sufferer to live with chronic, wide-spread body pain from head to toe. So if you say to me, "Selena, your fibromyalgia is all in your brain." I'd reply, "Why yes it is. It's a centrally mediated chronic pain syndrome."

Because fibromyalgia is a centrally mediated chronic pain syndrome, every drug manufacturer on the planet will try and see if their drugs that work on the brain and brain chemistry will work to relieve some fibromyalgia pain. This includes drugs for pain, epilepsy, depression and other mental health disorders. Touting these kinds of drugs for fibromyalgia pain may give some the impression that people living with fibromyalgia are depressed or have mental disorders, but it is clear from the research that
mental disorders do not cause fibromyalgia.

I am hopeful that if researchers and doctors continue to follow this line of inquiry and treatment they will stumble across some real and powerful treatments for fibromyalgia. That said, my optimism is tempered by the fact medical science still doesn't know everything there is to know about the human brain and neurological disorders can be some of the most debilitating and difficult to treat conditions. So in the meantime, I will continue to employ the
self-help techniques I have learned to manage my symptoms and maintain a modicum of quality of life until the science and medicine of fibromyalgia catches up to me.

But still, I wonder if that one sentence is a sign of change in the perception of fibromyalgia as a medical condition. Perhaps instead of arguing about whether or not fibromyalgia exists, there can be scholarly debate about which area of the brain is responsible for fibromyalgia symptoms. I, for one, would welcome such a change, even if it comes as a result from watching fibromyalgia drug commercials on TV.

What do you think of fibromyalgia commercials? I'd love to hear what you think, so please leave me a comment.
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Friday, April 9, 2010

He Wants Me Back...And So Do I

Arguing PenguinsImage by nouQraz via Flickr


My fibromyalgia seems to be in flare-up mode this week. Every body part aches so much more and the tiredness seems to permeates all the way to my bone marrow. Both these symptoms shrank my energy envelope and my corresponding ability to get things done this week. Perhaps the culprit is Spring, with her temperature swings, occasional rain showers, blowing winds and pollen everywhere. Oh, and her lure of it finally being Spring gardening time that beckons me back in the garden and get me overdoing it.

But you what really let me know I was having a rough time? I snapped at Robert several times this past Tuesday and got into two different quarrels with him that day too. My even temper and good nature appeared to have left the building. It's like an alien slipped in and took over my body and now I'm the host for someone entirely different. Someone overcome by chronic pain and fatigue, lashing out, dazed and confused.

In return, Robert got mad at me and snapped back. Taken aback, my first thoughts went something like this:
Apparently all the comments I made in the car on the way to our doctor's appointments Tuesday about how my pain and fatigue were so much worse didn't register with him. You'd think that after 5 years, he'd recognize that when I feel worse I have a shorter fuse.

Then I realize that's not the real issue here.

My hubby's life doesn't revolve around chronic illness, which means he had lots of other things on his mind. Given the state of our household, that he is the sole wage earner, I hope he never knows life with debilitating chronic illness. I need my husband to be healthy and fully functioning. He doesn't know what chronic illness feels like, so he simply doesn't understand how a flare-up can turn me into a totally different person. He just doesn't get it and that's O.K. with me.

I guess if I wanted a husband who could tune into every little detail about me and recognize the signs of my bad days before I do, I should have married a fellow mental health professional. Instead I married an engineer and engineers like to fix things. In many ways, our complimentary approaches is a key to what makes our marriage work: I help us recognizing and talking about the problems and then he helps us solve them. So you can imagine how unfortunate it is for him when he hears over and over again from my doctors that there is no fix for what ails me.

Hearing those words is hard for him, because deep down, my husband wants the real Selena back. So in defiance of the chronic illnesses that have a hold on me and won't let go, he won't stand by and let the sick Selena allow herself to be transformed into someone else . He keeps asking me to be me, like I was before I got sidelined and consumed by all my health problems. He wants me to do as much as I can do, be as much as I can be and act like I used to act before I became disabled. In many respects, he dogged determination to get me back inspires me to hold onto who I am and not be transformed into someone else by my illnesses.

Five years ago, I was never a person with a short fuse and I was not a person who snapped at other people. As I sit here writing this, I realize that I don't want to become that kind of person either. Instead, I need to better recognize how increases in my chronic pain and fatigue affect my mood and stop flare-ups from taking over and turning me into a grumpy mess. Yes, I need to learn to take additional steps to better care of myself in these situations instead of taking it out on my hubby. That's what the real Selena would do.

Thanks for breaking through my flare-up bad moments this week and reminding me who I really am, Robert. I love you for always reminding me who I am despite chronic illness.
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Thursday, April 8, 2010

I'm in the ChronicBabe Blog Carnival!


Jenni over at ChronicBabe.com listened to the ChronicBabe Bloggers! group at the ChronicBabe Club (aka the forum) and decided to host a blog carnival on her site. The first official ChronicBabe blog carnival is up and ready for prime time. Click here ChronicBabe Blog Carnival #1: I can bring home the bacon! Thoughts on work and chronic illness to read all the great posts featured.

I am included in this edition as well. Here is what I had to contribute under the section
Living with unemployment:
Selena at Oh My Aches and Pains! ponders the thought: What If I Could Go Back to Work? What would it take for her to go back to work in her current condition? She's not entirely sure, but she has some thoughts on the subject.
I hope you enjoy this new blog carnival and consider contributing to it as well. The next edition is on April 20th and the theme is Love, Illness and Other Confusing Things. If you want to participate, send your name (as you would like it to appear), the name of your blog, the name of your post, and a 1-2 sentence description of the post to chronicbabe@gmail.com. The submission deadline is Sunday April 18th at 10 PM Central (Chicago) time.

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Tuesday, April 6, 2010

Eating What's Inside the Box

A single week's fruits and vegetables from com...Image via Wikipedia

I've taken a plunge in a new direction in my adventures in fibro-friendly cooking and eating. An opportunity presented itself at Robert's work and I got him to buy in after much cajoling. It's got us both eating what's inside the box and we may be healthier for it.

What am I talking about?

We now purchase a bi-weekly organic produce box from South Central Farmer's Cooperative Community Supported Agriculture.

I wanted to do this ever since I watched Huell Howser's California Green episode Organic Farm. Huell visited the organic farm run by the students at Cal Poly San Luis Obispo and learned about the community supported agriculture program there. I watched them load weekly boxes with just harvested succulent red, orange and yellow bell peppers and my mouth started watering. I learned at the end of the program that they did not deliver their boxes to Los Angeles and was disappointed.

So when Robert told me one of his green-conscious co-workers was looking for participants for a bi-weekly produce box program, I said, "Sign us up!" He balked. I let it go but asked a few weeks later, "Did your co-worker get enough people to sign up for the produce box program?" At this point, he relented, explaining, "I see how much you pay for produce at the grocery store. If you can use all the produce in the box, we can try it out."

I am enjoying the surprise of getting a box every other week and not knowing what will be inside. Last week we got:

  • carrots
  • beets
  • radishes
  • red romaine lettuce
  • Bloomsdale spinach
  • red onions
  • cilantro
  • a whole variety of greens like kale, collard greens and mustard greens

This is, after all, greens season, and I am getting real good at incorporating the greens into dishes like Selena's crockpot chicken soup, broccoli and greens mac 'n' cheese, Venetian veal chops and my crockpot breakfast egg casserole. Of course, I also made a crock full of Southern style greens too. And surprise, surprise, my vegetable phobic hubby actually ate some greens.


Now I guess if I really wanted to, I could have been going to the local farmer's market all along to get produce like this. But the thought of getting up early (most farmer's markets here operate from 9 am to 2 PM), getting there and navigating the crowds with my mobility scooter made the trip daunting. That said, nothing beats having Robert bring a box home with him from work every other week. This is definitely very fibro-friendly for me: I get my organic farmer's market produce without having to go to the farmer's market.

I'll post some more comfort food recipes in the next few weeks with my "add some greens" twist to them so you can try adding more veggies to your diet too. For those of you in the Los Angeles area, check out South Central Farmer's Cooperative Community Supported Agriculture's website for drop off locations from Pasadena to Long Beach. Support them and you too can start eating what's inside the box.

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Sunday, April 4, 2010

What If I Could Go Back to Work?

My Work SpaceImage by ForestForTrees via Flickr


You might be surprised that I actually think about working from time to time. I know that I spend a lot of time here at OMA&P! talking about all the chronic illnesses I manage and sharing my tips for making life more fibro-friendly. I perhaps have failed to mention that prior to life with fibromyalgia, chronic pain and fatigue, I worked full time for over 10 years when I only had type 2 diabetes, chronic Hepatitis C and cancer survivorship issues. Unfortunately fibromyalgia has been the deal breaker, disabling me and making me unable to work. But that doesn't stop me from wondering every once in a while: What if, one day, I could go back to work?

You see, the truth is I miss going to work each day. And I miss much more than the paycheck. I miss the social interaction, having colleagues and spending my lunch and break times socializing with other people. I miss the sense of accomplishment I got working on tasks, projects and from getting things done. I miss developing my career, gaining experience, moving along my career path and striving towards my long term goals.

What would it take for me to go back to work in my current condition? I'm not entirely sure, but I have some thoughts on the subject. My preliminary list of requirements for working while disabled include:
  • A job I can do from home
  • Hours that I set for myself
  • Tasks that are amenable to being done in 15 minute work sessions
  • Control of deadlines or due dates, so I can give myself plenty of time to complete tasks and review my work before I submit it
  • The ability to set work aside for a day or a week (or two) when I get a cold/flu, brain fog or a fibromyalgia flare-up
  • A back-up plan to potentially hand off an assignment to someone else if I am unable to complete it on time
  • Projects that use my hands sparingly, so as not to aggravate my thoracic outlet syndrome symptoms
  • Work that doesn't require a lot of time on the telephone
  • Assignments that are simple, straight-forward and require only a moderate amount of brain power
  • And lastly, at this time, a position that only require up to 5 hours of work per week
To be honest, I am not sure what kind of job fits this list of requirements. Even if I could find a job that fits, I would need to consider what other activities would I have to give up in order to fit work into the available energy I possess. I estimate, using the rating scale at the CFIDS and Fibromyalgia Self Help website, that my current level of functioning averages around 30% of my previous, healthy normal. What that means, in practical terms, I that I have moderate to severe symptoms almost all the time, I am able to leave the house several times a week (but not daily), I can do around 2 hours of activities a day and I require many rest breaks during the day. Realistically, I probably need to be closer to 50 and 60% of normal for work to really be a possibility.

This whole exercise seems to reinforce my initial thoughts that my ability to return to work is dependent on an improvement in my symptoms and level of functioning. But that won't stop me from wondering right now what my life might be like if I just got 20 to 30% better, another big "what if?" Despite all the uncertainty about my future health, I refuse to give up hope and stop wondering "what if?" After all, what if your thoughts create your reality? If I have a choice, and I always do, I chose to believe that one day I will figure out how to go back to work despite my disabilities. Perhaps all I need is some more time to figured out what jobs work for me now and how I'll get them.


Do you ever think about what it would take to go back to work now that you are disabled? Share your thoughts on the subject by leaving me a comment.


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