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Thursday, July 28, 2011

World Hepatitis Day 2011-- Know It. Confront it. Get Tested.





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Wednesday, July 27, 2011

Almost Wordless Wednesday: The Debt Star



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Tuesday, July 26, 2011

The Debt Ceiling and Social Security: Don't Screw the Disabled & Elderly!

Scanned image of author's US Social Security card.Image via WikipediaCongress and the President better not screw this one up...

I simply don't understand how Social Security has gotten all tangled up with this debt ceiling crisis. I thought there were measures in place to keep the Social Security system solvent and functioning. I am even more confused after reading this article at the Huffington Post: Disentangling Social Security from the Debt Ceiling.

All I know is that there is going to be hell to pay if I don't get my Social Security check in August.

Why is the government picking on people who receive Social Security benefits?  By threatening to withhold payments, the government will cause undue financial hardship for the elderly and disabled who rely on these payments to pay the rent and buy food. What a clear demonstration of what little regard our elected officials have of the disenfranchised in our society.

How quickly they forget that the majority of us who receive these benefits have paid into the system, thus making us eligible for these payments.  I haven't forgotten all the hoops I had to jump through, like I was some kind of circus dog, just to qualify for disability benefits. Plus they seem to forget that many of us are paying income taxes on the benefits that we receive.  Unlike big corporations and wealthy individuals, we don't shirk our tax responsibilities through the use of shelters and shell games.

These tight economic times have taught the average citizen that we need to be more thoughtful with our money.  We all have been learning to spend less, save more and be creative about generating and leveraging our income.  Clearly, this is a lesson that our government needs to learn as well.

I suggest that instead of inconveniencing the disabled and elderly, the government needs to call in all the favors it extended to big business and the wealthy during this economic downturn. It's time for all these entities to start paying their fair share.  I bet if they started paying what they truly owed the government this whole debt ceiling crisis could be resolved quickly and easily.

Better yet, go after all those insurance companies who are making money by denying claims from people disabled by illnesses like fibromyalgia and chronic fatigue who can no longer work because of their severe pain and fatigue.  These companies are creating a greater burden on the Social Security Disability system. Through the use of policy limitations and loopholes, they discriminate against disabled people based solely on their diagnosis.  I have personally been affected by this insurance company practice and I think this is all kinds of wrong.

I also suggest that the government take the proverbial hard look at all of its expenditures and be more diligent about avoiding waste and inappropriate use of funds.  Right now, it's my opinion that everyone in Washington is getting paid way too much money for the mediocre work product they are giving us in return.  And why do we pay wealthy politicians an overly generous salary and provide them with a cadillac benefits package anyway? They should get paid what their constituents make to keep them in touch with the issues facing the average American.

My husband, the Republican, and myself, the Democrat, both agree that if I don't get my Social Security check in August we are going to join the protests that are going to result from this horrible decision.  It's also going to make us think twice about reelecting incumbent candidates for political office the next time we head to the polls.

I'm already sick and tired.  I don't have the energy to deal with the fallout from all these political shenanigans.  Get your act together Washington and stop stressing me out with your blatant disregard for my health and well-being.




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Monday, July 25, 2011

Question of the Week: No, No, No?

see ProhibitionSign.svgImage via Wikipedia When my husband told me that Amy Winehouse died over the weekend, I wasn't really surprised.  This poor soul, trapped in the hell that is addiction, has been slowly dying in front of us for years.  Her death reminds us all that addiction and chemical dependency need to be included in the category of chronic illness.

I think addiction is a chronic illness because, like so many physical illnesses in this category, its symptoms can only be managed, not cured.

Her death got me think about her hit song Rehab, so I surfed the Internet to watch a video of this song.  What struck me about the song this time was the use of the phrase "No, no, no!" in response to the suggestion that rehab was needed.  While I know these lyrics probably came about because repeating no three times really fit the song, it struck me how emphatically it got the point across that there was no way this was going to be considered an option.

Herein lies the lesson for those of us still struggling with our chronic illnesses.

Everyday, we face choices about how we manage our symptoms.  These choices are presented to us by our doctors and healthcare providers, our families and friends, our peers and, with Internet access, a multitude of other sources.  We choose which suggestions we will try.  It goes without saying that our choices are often influenced by our circumstances, our resources and our mindset.  Hopefully we make the right choices for ourselves...

My personal approach to this quandary is to be as open as possible to trying new things, as long as I can financially afford them.  So if I hear myself saying "No, no, no!" it immediately sends up a red flag, alerting me to explore further my adamant refusal to consider something new.  That leads to some introspection: time to explore my resistance and discern what is holding me back.

My strategy for moving beyond these kinds of roadblocks is to simply make a deal with myself.  I agree with myself to try a new approach for a set period of time and I give myself the option to stop if the new treatment isn't working after a reasonable amount of time. In this way, I don't let my fear and anxiety prevent me from experiencing something that could help me.

My most recent example of this principle in action is my decision to schedule carpal tunnel surgery. I've picked a surgeon who uses a less invasive technique so I am not left with a hug scar on my wrist.  This surgeon is also extremely skilled at what he does, having performed the first hand transplant at UCLA earlier this year.  And I'm coping with my pre-surgery anxiety by focusing on the positive, pain-relieving benefits surgery will have, benefits which could quite possibly help my overall chronic pain level.

Can you relate?  Share your "No, no, no!" moments and how you overcame them in a comment below.  Or better yet, head over to the Oh My Aches and Pains! Facebook page to discuss this topic further.



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Friday, July 22, 2011

More Tools from My Chronic Pain Toolkit

1881 theatre programme for PatienceImage via Wikipedia

Over a year ago, I wrote a great post about my chronic pain toolkit, which I invite you to rediscover when you are done reading this post.  Today, I realized that I have more than just those three tools in the box, so I wanted to share more about the unconventional items that help me live my best life despite chronic illnesses.

Flexibility

At the risk of exposing the geek that I am, I admit that I am a huge Big Brother fan.  I mention this because the motto of the show is "Expect the unexpected." which pretty much sums up what living with a chronic illness (or six) is like for me.

While I'd like to say that my life before chronic illness was calm, cool and collected, it wasn't.  I've had plenty of prior experience with the unexpected, so I know all about being flexible. In that regard, I guess you could say that my prior life has been preparing me for my current set of circumstances.

The greatest lesson flexibility teaches is to just go with the flow of life, instead of trying to swim against the current.  Go with the flow and you can float and relax; fight the water and you risk getting sucked under or drowned.

Persistence

I love my hubby.  One of his quirks is that he is a big planner.  I used to be a big planner too, but I've learned the hard way that plans and the highly variable symptoms of my chronic pain and chronic fatigue don't always cooperate.

That is where persistence comes in.  It's that whole "If at first you don't succeed, try, try again." adage.  That means I can't let my derailed plans get me down.  Sure, it is hard to accept that getting things done might take a really long time--from three to ten times as long when compared to my healthier days.  I just have to reschedule (and reschedule) and believe that if it is meant to happen, it will happen, in its own time and space. 

Patience

I'm not saying that I am by nature an impatient person.  Quite the contrary!  What I am saying is that living with chronic illness presents challenges, obstacles and delays that would try the patience of a saint.  And I am no saint...

This is where my other tools come in handy.

This is where I need to have faith that I have a purpose, albeit one that I do not clearly see or comprehend because of fibro-fog.  This is where hope keeps me focused on the fact that good things are just around the corner and that I can live a good life in spite of my health challenges.  This is where love comforts me and reminds me that my poor, sick body is doing everything it can to keep me moving forward.


Funny thing is, the more I write about my chronic pain toolkit, the more thankful I am to have discovered these wonderful coping strategies that get me through even my very worst, terrible, no good, very bad days.




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Wednesday, July 20, 2011

Wordless Wednesday: A Few of My Least Favorite Things

headaches
insomnia

loneliness

fatigue
pain

too many pills

too many doctor's appointments



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Tuesday, July 19, 2011

Fail Awards: These Byte!

System Fail by DGBurns

Lately it feels like technology is kicking my butt. Every time I turn around, it seems like something is failing and needing either my time, my money or both. It almost makes me long for the simpler days of my childhood, when we didn't have computers, DVD players and appliances with motherboards.

No Longer Built to Last

Over the past week and a half our 10 year old Kenmore refrigerator has been dying. It seems the electronic brain can no longer maintain a constant temperature, so the freezer has been jumping between +20 and -20 degrees.

First, my hubby and I debated about repairing it, but we discovered that our family, friends and even Consumer Reports, don't recommend repairing a malfunctioning refrigerator.

So then we started pricing replacements.  Wow, I can not believe how much a refrigerator costs! Luckily last Friday, we found one we wanted, one that was highly rated by Consumer Reports, on sale. We even got a salesperson who sweetened the deal with an extra 5% off. But it still set us back quite a bit and we were forced to put off other needed purchases.

No Longer Compatible

My computer has also been acting up a lot lately. It seems my copy of Windows is updating itself frequently, sometimes twice in one day. All these updates are now interfering with some of the programs running on my computer.

For example, my printers driver suddenly stopped working, just when I needed to print out some medical records to take to a doctor's appointment. It took me over an hour just to download new drivers and install them. I hate it when these 'time-saving' devices waste my time like that.

Then I tried loading an older version of Adobe Acrobat back onto my computer and was told it was no longer compatible with my version of Windows. I couldn't find a fix or patch on any of the computer forums online and the only suggestion from Adode was to upgrade to a newer version, which would cost me $199 USD. Good grief!

No Longer Supported

Last year, we bought a DVD player with our tax refund to replace one that died. We splurged a bit and got one that could connect to the Internet and run things like Netflix and Amazon Instant Videos. Unfortunately, we weren't able to test these features right away because the box we bought required a cable connection to our Internet router.

After we figured out how to get the cable to the box, we were in for a nasty surprise...our model year 2010 box is no longer supported by the manufacturer LG.

Seems the 2011 DVD players have a whole new software interface for the Internet features, so the company is no longer updating the 2010 boxes to add new features as they become available. Of course the DVD manufacturer blames the different services for not making updates for the 2010 boxes, but I figure that's because the company is only asking for updates on their newer software platform.

I get it that over time technology becomes obsolete. I'm just shocked that our DVD player became obsolete in 6 months!


For all these reasons, and more, I'm giving my second set of Fail Awards to Kenmore, LG and Windows.


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Monday, July 18, 2011

Question of the Week: Ever Think 'That Could Be Me'?

A headstone in the Jerusalem British World War...Image via Wikipedia

After learning about the death of my 42 year old cousin from complications of type 2 diabetes, I wondered if the same fate lay in wait for me.

I thought the same exact thing when my mother died from metastatic colon cancer in 1999. My mother was only 61 when she died.  Her death spurred me to get my first colonoscopy last year.  This screening test was something my mother didn't do consistently and it wound up costing her her life.

I also found myself concerned in 2004 when, at the age of 70, my dad died from complications of Alzheimer's disease. Although, if I am honest, I was worried about getting Alzheimer's ever since I knew my dad had it back in 1997.  And I still worry about it from time to time.

Since my cousin's death sort of knocked me for a loop, I thought I'd do a quick Google search and alleviate my fears. No such luck...

I thought there would be some kind of information about predicting your own cause of death based on how your family members died.  Can you believe that I couldn't find one article on this subject?  That just doesn't seem right.  After all, it is my understanding that some illnesses run in families and are passed from one generation to the next.

I really wanted to find a plethora of articles that explored my risk of death from diabetes, colon cancer and Alzheimer's disease based on my family history so I could get some perspective and put my fears to rest.  Instead, those fears get to inhabit a small, dark corner disguised as huge question marks.

*sigh*

Do you ever find yourself wondering if you will die from the illnesses that took your grandparents, parents, sibling or other family members away from you?  I'd love to hear what you have to say on this topic, so leave me a comment or head over to the OMA&P! Facebook page to join the discussion.


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Sunday, July 17, 2011

Bits and Pieces: A Sunday Extra Edition


Extra Warmth by somadjinn

Things have been a bit crazy around here.  Thankfully I find myself enjoying a little pause in the action this weekend, so I thought I'd take the time to make up for some missed posts during the week and write a weekend update.

My Family

I got a phone call eight days ago from one of my Aunts back in Illinois. One of my eight cousins died on July 8th from what appears to be complications from type 2 diabetes. He was only 42.

As you know, I have type 2 diabetes too, so the news kind of hit me sideways. Granted, our situations are different, but still it gave me pause. Whenever someone in my family dies, like when my mother died of colon cancer or my dad died of Alzheimer's, I can't help but wonder, "Could that happen to me too?"

My Hands

Earlier this month, I followed through on a recommendation from my visit to the Mayo Clinic in Arizona and saw an orthopaedic hand surgeon here on Los Angeles.  He confirmed the finding that I have significant carpal tunnel symptoms in both hands and that surgery can be a fix for my condition.  This past Thursday I scheduled surgery for my right hand on Wednesday, August 31.

Now my challenge is to stay focused on how much this might help me pain, instead of getting sucked up into the anxiety a pending surgery creates.

My Sleep & My Diabetes

Have I mentioned that I have been using a very low dose of Seroquel, prescribe by a sleep doctor, to help me get better quality deep sleep for a while now?  Unfortunately, this medication is known to cause problems with blood sugar.

Due to my ever increasing Hepatitis C viral load, I've been having more and more problems managing my blood sugar. It's gotten to the point where I contacted my endocrinologist asking if I needed to start a second medication in addition to Victoza.  This week I decided to take a drug holiday. Lo and behold, my blood sugar has dropped from between 180 and 200 to 140 and 180 fasting in the morning. Seems stopping this medication might be the right direction to move in.

I am worried that in the long run this is going to negatively impact my sleep, but I do have a new medication to try from my neurologist that might be able to help.

My Blog

I decided a few months back I wanted a blog make-over. I also decided it was time to hire a real blog designer to help me with this task. My project got off to a really rough start, but I made some changes and hired a new designer.

I am now working with Katie Lane of DreamUp Studios who is making the process a breeze and I am so excited about my upcoming blog redesign. I've loaded a couple of things onto my blog today to give you a sneak peek of things to come.

If you are thinking of hiring someone to redesign your blog or website, create a logo or draw a custom illustration, I strongly encourage you to head over to DreamUp Studios and take a look at the awesome things they can do for you too.







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Wednesday, July 13, 2011

Wordless Wednesday: Computer Virus






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Tuesday, July 12, 2011

If At First You Don't Succeed, Try, Try Again

Try AgainImage by lydiashiningbrightly via Flickr

American educator Thomas Palmer (1782-1861) wrote this famous proverb in his Teacher's Manual
'Tis a lesson you should heed, try, try again. If at first you don't succeed, try, try again.
Well, Mr. Palmer, I am taking your advice

A week or so ago I went for a follow-up appointment with my hepatologist about my chronic Hepatitis C infection.  He told me two things at that appointment.  First, that my viral load had gone from 11 million to 24 million in a little over 12 months.  Second, that I apparently have the gene variant that makes me sensitive to pegylated interferon alpha, which increases my chances of responding to Hepatitis C treatment.

We also talked about the two new antiviral drugs approved for the treatment of Hepatitis C by the FDA in May: Incivek (telaprevir) and Victrelis (boceprevir).  So far, my doctor has 10 patients undergoing treatment with one of these two drugs.  When I asked about using the two new drugs together, my doctor told me that since they are both protease inhibitors they cannot be used together.  So the new standard of treatment is pegylated interferon, ribavirin and a protease inhibitor.

As for a real Hepatitis C drug cocktail, that is still a few years away.  There are polymerase, NS5A, NS4B and NS3/4A inhibitors in the drug pipeline, but even with FDA fast track status it will be at least two years for approval.

I mentioned that I was having more problems managing my diabetes before I got my viral load results, and it was interesting to hear my doctor talk to me about how the Hepatitis C virus interferes with the action of insulin in the body, causing insulin resistance.  Usually, it's me insisting there is a connection and my doctor dismissing, denying or deflecting the inquiry.  It's both validating and a little scary when your doctor starts agreeing with your anecdotal reports.  Scary because having your doctor agree with you makes it feel even more real ... and threatening.

I also talked about having more fatigue, something that I knew was the truth but was trying to pretend wasn't so.  My higher viral load though pretty much puts the kibosh on thinking otherwise.

So on the car ride home, I asked Robert if it was time to consider trying Hepatitis C treatment again.  I talked about how I thought I might be in a better place given that taking a daily Vitamin D supplement has treated my Vitamin D deficiency and gotten my immune system functioning better.  I also reviewed with him how adding a protease inhibitor to the mix could cut my treatment time down from 48 to 24 weeks.  And since I am a responder to pegylated interferon, my chances of treatment success might be pretty good--if I can tough out the treatment and all the side-effects.

My next appointment is in January 2012.  This will give my doctor some more time gaining experience using the new medications.  This will give me time to prepare and get into the right mindset.  This is my timeline to getting to the starting line and trying Hepatitis C treatment again. 

Yes, I am going to try, try again.


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Annoucing the Winner of My Blooming Beauty Contest

So I headed over to Random.org and asked the random number generator to select the winner of my Blooming Beauty Contest.  Here are the results:

Random.org chose comment number 15.

Congratulations Alethiah, you are the winner of a a Mary Kay® Limited edition Lashes Love It! bundle, which include the *new* Lash Love™ Mascara in I ♥ black, best-selling Mary Kay® Oil-Free Eye Makeup Remover and a pretty pink eyelash curler. You have five days to contact me to claim your prize.

Everyone else will receive a coupon for $10 0ff your purchase of $40 or more plus free shipping from me, your friendly Independent Mary Kay Consultant. I will be sending these coupons by email in the next day or two. Please contact me if you haven't received yours by Friday, July 15th.

Thanks for playing. Stay tuned too because I will be doing another great Mary Kay giveaway in the Fall.



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Monday, July 11, 2011

Question of the Week: What Would You Do?

broken window....Image via Wikipedia
This week I want your advice about how to handle a situation that occurs where I live, literally. To be specific, the difficult person I am dealing with lives next door and occupies a bedroom 14 1/2 feet from my back door.

Of course it hasn't escaped me that the irony here is that this person would say the same exact thing about me if they were talking to you...

I bought my house in a starter neighborhood in Los Angeles in 1994 when I was single.  Now when I say starter neighborhood, what I mean is small houses or bungalows on small lots with the dwellings close together.  When I moved in, there was a nice older couple living next door.  The wife and I chatted from time to time, and told me to feel free to cut myself a rose off the bush that was just on the other side of my driveway.

Life would have been just peachy if that is the way things had remained...but that's not how life works, is it?

As far as I know, the bedroom in question was unoccupied at the time I bought my house.  At least I think it was because I didn't hear a complaint out of that window for many years.  But then someone moved back home...

I'm not a snoop, but I did hear that person say they had some kind of autoimmune disease (maybe lupus?) when they were talking very loudly on the phone trying to make a doctor's appointment.  So while the complaints have escalated over the years, I have tried to redouble my efforts at turning a deaf ear when they come at me through that window.  

But here is the crazy thing.  If my neighbor had their way, I would never go out my back door.  Because apparently every time I go out my back door, the only door we really use, I am being all kinds of rude and inconsiderate.

I get yelled at for taking my trash cans down the driveway "too late" at night.  I get yelled at for my back door light being "too bright."  If I "make too much noise" I am greeted with "Jesus!" and the sound of a window slamming.  Late last night, I took the dogs out.  We were all quiet, no one said (or barked) a word, yet I hear mumbling coming out of that window as we all head back inside.  All I caught was the word "a#@holes!"

Really?!?  I'm the a#@hole?  For using my back door?  For paying for a fence that goes along the side of my driveway, creating a barrier between my back door and your window?  For training my dogs to be silent as the go out the door to do their business? Really?!?

Never has there been a neighborly exchange or conversation.  No knock on my door, no "I'm your neighbor next-door and I am having a problem..." It seems my neighbor isn't interested in having a conversation, only complaining. 

Here is the thing.  If it was me in that bedroom, I wouldn't be complaining.  I would focus my efforts instead on dealing with the situation at hand and making things better from myself, which is what I do in my own bedroom.  I have:
  1. black-out curtains
  2. a sound soother that plays white noise
  3. air-conditioning
  4. a sleep mask
  5. lots and lots of disposable earplugs
You see, my health problems have completely screwed up my sleep schedule and I get my best sleep in the morning hours.  You know, the time when everyone is leaving for work, the trash trucks come by to collect the garbage, the gardener comes to mow the lawn and the UPS delivery person drops off packages.  But I have taken the steps to insulate my sleep environment, so I rarely get woken up by any of these intrustions--light, sounds or the need to leave my window open and invite these problems in.  

To their credit, the next-door neighbor recently got black-out curtains.  But this is Summer and that window is always open now at night, which means the complaints are more frequent...and getting down right nasty.

I don't know if this person is ever going to find the peace they desire if they keep seeing me as the problem.  After all, I'm not moving.   I'm not remodeling my house and relocating the back door.  I'm not going to stop going out my back door to take my dogs out or tend my garden or take the trash out.    

After last night's encounter, I am wondering if you would handle this situation differently?  Do you have any advice for me?  How do you handle difficult people?  Can you relate to my situation?

I can't wait to hear what you have to say, so leave me a comment, shoot me an email or join the discussion over on Facebook.


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Wednesday, July 6, 2011

Patients for a Moment (PFAM): Independence & Chronic Illness

Live Free!Image by Hryck. via Flickr
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
~The United States Declaration of Independence


These are perhaps some of the most famous words ever written about independence.  Too bad chronic illness throws a monkey wrench into the pursuit of these inalienable rights. Suddenly everything we hold dear is affected by illness and we are often left feeling so much less than equal.  Unfortunately, independence is one of many things that can get changed, modified and taken away when you start living with chronic illness, day in and day out.

Today I have the honor and privilege to showcase what independence means to persons living with chronic illness--the good, the bad and everything in between.

Phylor explores her state of (in)dependence and shares with us all the ways chronic illlness makes her dependent on others.  The she steps back and revels in the things that chronic illness cannot take away from her.  You'll be inspired by her battle cry when you head over to Phylor’s Blog: chronic pain, life, and all that to read her post.

Over at Painy Days & Mondays, Summer explores her complex relationship with the cane she uses to ease her pain and exhaustion in Letting Go of Symbolism.  This story beautifully illustrates how something that might be considered a symbol of infirmity actually became something that granted her more independence.  Her second contribution, Suggestions on How to Get Out of the House, is a cornucopia of good ideas on how to prevent your chronic illness from keeping you housebound when you really, really, really want to get outside and do something fun.

Many of you will be able to relate to Kathy of FibroDAZE as she talks about her dream of being Miss Independent and her reality of needing to rely on her husband and his paycheck for food, shelter, a computer and spending money.  She shares her genuine fears about what would happen to her if anything happened to her hubby.

A lack of Independence can really get you down.  Many of us have been there like Laurie of Hibernationnow's Blog is now.  Her chronic illnesses are preventing her from participating in her son's college orientation this summer and other fun summertime activities and she is really feeling crummy about it.

This next post from Mo is Blogging...I Think made me think of myths and fairy tales.  You see, while chronic illness has made Mo a little short on her goal of Independence, her illness has spurred the growth of independence in her two sons and her husband. It's almost like what she gave up went directly to her sons...

Dana reminds us that chronic illness can have its ups and downs, ups and downs that can translate into alternating periods of dependence and independence. Right now things with her chronic illnesses are good and she is enjoying what she calls My New Found Independence!  Help her celebrate by heading over to I Already Gave My Right Arm To Be Ambidextrous! and don't forget to leave her a comment.

It's a real pleasure to introduce you to Emily Ruth of Chronically Creative, a first time Patients for Moment (PFAM) blog carnival participant.  Emily is a young adult who is supposed to be transitioning towards independence.  Instead, she is learning about Living a Self Sufficient life Despite Chronic Illness.  Stop by, say hi and marvel at how her independent spirit shines through her words.

In this post from the ChronicBabe.com archives, Jenni answers the question "How does pain affect your independence?" in How asking for help has brought me closer to friends.  This post is part of a group blogging roundtable discussion sponsored by the How to Cope With Pain blog, so you'll want to click this link to read how other top bloggers answered this same question too.

The Oh My Aches and Pains! contribution to this topic is my post What Ever Happened to Miss Independent?  It seems that I'm not the only one asking this question; my husband would like to know where his "I can do it myself" wife went too.  Which just goes to show you that the people around us are feeling the impact of our chronic illnesses too.

In addition to the contributions I received, I went searching for a few more bloggers to feature in this edition and found some real gems.

I love the author of Coping With Chronic Illness.  She reminds me of a really good mom or therapist.  Her post Independence Day is the most wonderful pep talk.  Bookmark it for days when you are really missing your independence and need a gentle kick-in-the-pants to get over it and get on with the business of living.

Nuni's post about all the Things that help me maintain independence fit perfectly with our PFAM theme so I wanted to include it.  She reminds us that sometimes it's the little things that can make a big impact on our sense of freedom as well as our health.  Nuni writes about what it is like to be a college girl with chronic illness at Ponderings by Nuni.

I was touched by the frankness and honesty of Deandra's discussion of independence in her post Living with cancer: Evolving independence at Women's Magazine.  Most of all, her message that every little thing we do to take care of ourselves is a small step in the direction of independence is one we all need to take to heart.  Deandra lost her battle with ovarian cancer in July of 2010, but lives on in these words of wisdom she shares with us all.  

Thank you to all the patient bloggers who submitted posts. Thanks to Leslie who does an outstanding job of managing the PFAM blog carnival and to the carnival founder Duncan Cross. Once again, I had a great time hosting (minus a few technical glitches on my end--sorry!) and promise to volunteer again soon.

Please mark your calendar for the next edition of PFAM, which takes place on July 20, 2011 at Tonja's blog Pink Doberman. If you'd like to participate, the submission deadline is July 17th.  Visit the Patients for a Moment website for more information, including submission guidelines and information on how you can host PFAM on your blog too.

   


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Tuesday, July 5, 2011

Question of the Week: Waking Up Worse Off?

365:215 Sleepy HeadImage by angelsk via Flickr
If you live with fibromyalgia like I do, then you know that waking up can be painful. Morning is often when my body feels the most stiff.

Someone mentioned to me that this is so because our bodies don't like being in the same position for long periods of time. Of course, when you are asleep, you can't help but be immobile for much of that time.

So it goes without saying that the best cure for  morning stiffness is trying to wiggle, stretch and get yourself moving.

But then there are the mornings when I am just not sure what is going on when I am asleep...

For example, I woke up this past Saturday morning and could not put any weight on my right ankle. I went to bed the night before with absolutely no right ankle pain at all. It was like I injured it horribly while I was sleeping and now I was suffering the consequences...big time!

I have been employing rest, ice, compression through the use of an ankle brace and elevation all weekend. It is helping in small increments, but my ankle still hurts three days later. I almost think a visit to the doctor might be in order, but since this is my gas pedal foot, I'm not quite sure how I would get there safely.

Then yesterday I woke up and it felt like someone punched me in the breastbone.  I hurt so bad right in the middle of my chest.  I struggled for the first few wakeful hours and the pain did subside, but did not disappear completely.

I really have to wonder if aliens are borrowing my body while I am asleep and having a lot of reckless fun inside it.  At the very least, you'd think they could return it in better condition after a few zaps from their advanced healing gadgets.

I'm feeling like a weirdo now, so for my own sanity I have to ask all of you: do you wake up worse off too?

Kindly leave me a comment with your reassuring words here or over on the OMA&P! Facebook page. Let me know I'm not the only one feeling all beat up in the morning!
 


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Monday, July 4, 2011

What Ever Happened to Miss Independent?

Statue of Liberty in New York seen from its ba...Image via Wikipedia 
To paraphrase a popular Kelly Clarkson song, I truly used to be:

Miss independent,
Miss self-sufficient.

Miss on her own,
Miss fully grown.

Miss unafraid,
Miss "Get out of my way!"
Miss "I can do it on my own."

Boy, do I miss those days!

I ordinarily don't bemoan my fate, but recently my spouse had a few moments of frustration, sadness and anger about my constant reliance upon him.  More specifically, he voiced his annoyance at having to do so much for me, so many things that I used to do on my own, so many things he wished I could still just do for myself.

This led to a long, late night talk about how truly bad things are for me.  I explained in great detail how chronic illness really affects me, making it so bad that this former Miss Independent needs to lean on her hubby for even the most basic things.  About half way through, tears creeped into my soliloquy as I got in touch with my feelings about all my losses and the grief that goes with them.  

It was a difficult conversation, but one that was needed to help my hubby grow in his acceptance of my chronic illnesses.  Since the talk, I can see he has let go of more of his angry feelings about my chronic illnesses and the things they deprive him of and impose upon him as well.

Two things I marveled at during this discussion:   
  1. How different our timetables are for developing an acceptance that chronic illness is a part of our life together for the foreseeable future.
  2. How my reality could really make me really depressed if I chose to constantly dwell on it. 
I can really see how much harder it is for a spouse, family member or friend to accept the consequences of chronic illness.  They view me through their frame of reference, which is the complete opposite of how I am physically feeling.  They have to imagine how it feels to be ill and how it can limit someone while they feel fine, have little pain and are full of energy.  I acknowledge that this is a tough task to accomplish, especially when you can never really know what having chronic illness is like unless you have it yourself--and I really don't wish that for anyone.

I also got in touch with how overwhelmed with sadness I become when I think about all the things I cannot do.  I can see where this focus might lead me down a dark and dreary path where I could be overcome by depression.  Which make me appreciate how functional it is for me to take the focus off my limitations and redirect it towards discovering what I can do.  I admit this was very difficult to do initially, but with practice this coping strategy becomes easier with time.   

Make no mistake: I am not living the life of my dreams.  But that isn't going to stop me from figuring out how to take what I have and make it into something worth living for.  I also have to remember that I need to share that with my husband, family and friends so they too can see that chronic illness isn't just about loss and sacrifice.  I have to show them it's about growth, change and new directions. 

Oh, and maybe finding some money in our very tight budget to hire someone to help me out around that house so my hubby doesn't always have to be my "go-to" guy.  As my caregiver, he gets overburdened at times and we need to find ways to help him out too.

So no, I am no longer Miss Independent.  I'm more like Miss "I Need a Little Help From My Friends" and Miss "I'm So Thankful for a Wonderful Husband Who Love Me No Matter What." That said, being more dependent is a BIG change for me, one that comes with many lessons to learn.  I'm not sure why I need this in my life right now and I can only hope that in the big picture it helps me become the person I am supposed to be.



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