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Thursday, September 29, 2011

In the Face of Pain:
My Interview with Maggie Buckley (part three)

Maggie:  The nature of pain care in our country right now is undergoing a big change, unfortunately, and some approaches are being restricted for good cause and some approaches are being limited for no real good reason or because of politics.

In Washington State for example, the State legislature has regulated opioid use, stating who can receive these medication, who can prescribe them, under what conditions and setting an upper limit on dosage and number of pills prescribed.  So that doesn't help any of us with chronic pain because now legislators, not doctors, are dictating what health care decisions are going to be made.

Selena: Laws like that come from a mindset that I don't understand.  I don't get why you don't adequately treat people who are in pain and you pass laws that withhold a pain treatment option that might help.

Maggie: Well, opioid pain medication is often vilified because it is morphine-based, so people think it must have something to do with illicit drugs.  So despite the actual statistics, it is the people with the personal stories about how they have lost a loved one, someone who is not living with chronic pain, to misuse or abuse of prescription pain care medication that are swaying public opinion.

The majority of people who overdose on opioids do not have their own prescriptions for these medications.  They have acquired somebody else's medication.  The suspicion then falls to the person with the prescription: Are they selling it? Did they give it to somebody?  The person who has passed away can't be questioned as to where they got the medication.  And in our culture, it is wrong to vilify the dead person; it's wrong to say that they died through actions of their own.

So grieving families tend to blame those of us who have chronic pain and have prescriptions for any "dangerous" medications.  They are not cognizant of the full picture.  That's why awareness needs to be raised. That's why we need more advocates out there explaining that there are more people in this country who have overdose deaths from acetaminophen than from prescription opioids.

It's another examples of how a little information in the wrong hands going a long way.

Selena:  I can also see how withholding opioid medications might mean that some people are using over-the-counter pain medications to excess or inappropriately because it's not really helping them manage their pain.

Maggie: Yes, so if consumers aren't educated and know what the pain treatment options are, they are going to be focused on taking a pill.  And if they are just focused on pills, and their doctor isn't giving them a prescription or not giving them enough of a prescription, then they are going to go some place else to find some other substance.  Whether it's an over-the-counter drug, street drugs, marijuana or alcohol, if someone is in pain they are going to be looking for relief.

As a person with pain, I am sure you understand and agree with me that the one thing we all want hope.  We want to know that in this moment, right now, when we have so much pain and we don't want to go on like this, what keeps us going on is that we have hope that we don't always have to be in pain.  We have hope that there is something out there that is going to help us.

Selena:  I guess I have gotten to a point where I don't hope I won't have pain, just that I will be able to manage the pain I do have.

Maggie:  That is pretty much how I think too.  For me, the pain is never going to go away. I've never known anything but pain.  I have experienced pain since childhood and I just want it to be managed enough so I can participate in life.

Selena:  Yes, exactly.
     


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Wednesday, September 28, 2011

In the Face of Pain:
My Interveiw with Maggie Buckley (part two)

Selena: Let's talk a little bit about your own personal pain advocacy.

I read your biography at the American Pain Foundation website, so I know that your live with Ehlers-Danlos Syndrome (EDS).  EDS can include symptoms of  fibromyalgia, which is a condition I have as well.  I am wondering how you have been able to successfully advocate for yourself in terms of getting better pain treatment when you live with fibromyalgia.

My experience has been that fibromyalgia is a difficult condition to have when it comes to actually getting some pain relief. 

Maggie:  Yes, it is a challenge.  I think the challenges are with communication and knowing what your options are.  Part of that is examining any preconceived notions you have, like: 'This is what I am going to accept.' 'This is what the doctor is going to do for me.' and 'This is what I want.'

There is a delicate balance here: you know what you want, you know what you need and then you need to navigate the healthcare system.  Whether it's your HMO or you insurance company, maybe you need to get them to "sign off" on certain things. In a lot of states there is a "fail first" protocol where you have to do it "their way" before they will consider any specialized treatment.

The first step is becoming very clear with yourself about what is going on and outlining your objectives.  The next step is documenting your status quo.  A good place to start is documenting what your pain level is using a pain notebook.  I volunteer with the American Pain Foundation (Maggie is on their Board of Directors), so I'm going to recommend the APF's pain notebook.  It has downloadable PDF pages that will help you build a notebook, something that you can share with your healthcare provider that will show the pattern of your pain.  Then your nurse will be able to summarize it or highlight things for the doctor to look at.

Also, with pain care in general, some people are very narrowly focused on 'I need to take a pill to do this.' or 'I need to have physical therapy to do this.' or 'I need to lose weight to get rid of my pain.' There are a lot of people who, when they first get into a chronic pain situation, are very clear in their minds and have this image of  'This is what pain-free is going to be and what is it going to mean and how I am going to get there.'

Usually that is not the case.

So being open to the idea that there are six or seven different approaches to pain management, whether it is medications, injections, surgery, complimentary or alternative medicine, implantable devices and/or physical therapy.  It is most likely going to be a combination of approaches.

It is more about creating a recipe of what works for you.

So you take a little bit from this approach and a little bit from that approach and then you mix it together.  So maybe to start on the road to pain management you'll need prescription medications and physical therapy.  You'll need the prescription medications to get your pain down to a certain level so that you can actually show up and participate in physical therapy.  Maybe with an increase in physical therapy, the benefits from medications are diminished, so you add in something else like meditation, acupuncture or massage.

As you go along, you learn and get better at managing your pain.  So if you have an injury or setback you'll add something back in that worked in the past.  Patience is a big part of it, as is tracking your symptoms so you can present a full picture of what is going on with you and have documented proof.  It's also about having really good communication skills: not just being able to tell your story, but being able to listen and participate respectfully in conversations.

And finally, don't be shy about letting a healthcare provider go if they aren't giving you the support you need and working with you on your situation.  You are a consumer and it is O.K. to go find somebody else.


Selena:  That's a good point.  I know in my own personal experience it has taken going to several different doctors before finding a doctor that was really willing to look at all the pain treatment options and offer me something from everything available.  I found that there were some doctors who were only willing to go so far with pain treatment.  Once I tried everything they were willing to offer me, I had to go see someone different because there wasn't anything else they were going to offer me.

I am wondering if, through your advocacy work, this a story that you hear a lot and is this something that you are trying to change?

Maggie: Yes, with everything that I am involved with.  Using the In the Face of Pain website is helping me do this; it is one of many tools that I use.  Plus there are links on the In the Face of Pain website to medical organizations that are another tool you can use to help find pain management healthcare providers.

I think finding a healthcare provider is just like dating. First you meet, then you decide 'Well, do I want to see them again?' and 'What am I getting out of this relationship?' You might decided to break up with that doctor and start the whole "dating" part over again.  And it might take a second, or third, or fourth, or fifteenth round of "dating."  It can be very frustrating and it wears people down.

Contacting support organization for your particular condition, or similar conditions, can help. So for example, for people with EDS, I always advise them to consider tapping into support organizations for fibromyalgia, arthritis or heart-related conditions because those are all the symptoms and systems that are affected.

When you have exhausted the list at one organization, take a look at somebody else's list for ideas about who might be able to help you.  Sometimes finding good pain care means thinking outside of the box.

To be continued... 


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Wordless Wednesday:
If I Lived In a World With Less Pain...







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Tuesday, September 27, 2011

In the Face of Pain:
My Interveiw with Maggie Buckley (part one)

Selena: Hi Maggie. I'm really glad that I have this opportunity to interview you in connection with the new site In the Face of Pain.

Maggie: So have you been to the new website?

Selena: Yes, I have been to the website. I was there looking around and found the self advocacy video.  Plus I reviewed the menu of information at the top of the site.

Maggie: O.K.

Selena: So my first questions for you are why was the website created, what was its back-story and what are you hoping to accomplish with the website? Do you want to turn all of us living with chronic pain into advocates?

Maggie: Turning people living with chronic pain into advocates is my personal mission, so yes!

Selena: O.K. So tell me how you see that happening.

Maggie: I want to start by saying that I am not one of the creators of the website. I am just a user and I am one of the dozens of what they call "Voices of Hope" who are featured on the website. (Read and hear Maggie's story here.)

Before it was a website, it was a big, huge binder back in 2004 when it was first released. Naturally as technology has progressed it went digital with a CD-ROM with all that same information on it. The challenge, of course, was to keep everything updated, current and relevant. The website I think is just the latest logical step that can make that happen.

So I began using the In the Face of Pain website after attending a couple of different seminars where it was part of the curriculum. And because I was doing a lot of the same advocacy work already, I thought, 'Oh, wow, with this new website I don't have to reinvent the wheel.'

So, for example, if I am trying to get other volunteers to write letters to the editor, I have this new website that I can send them to for advice on how to do this.

When someone is looking for facts to use to update a Twitter feed, write a blog post or a create a Facebook status, I can direct them to the Key Messages About Pain information there as well.

If you live with a specific pain condition and you want to educate others about it, you can use the fact sheets to help you do that, like the ones for back pain, cancer pain, fibromyalgia pain and sleep & pain.

I also encourage people to contact their legislators about pain care issues and legislation addressing pain care.  I want them to understand that just by calling and saying "I support this." or "I don't support this." is enough to make a huge, huge difference in the lives of people living with pain.

The website is really a "how-to" resource filled with many examples of how you can advocate for yourself or someone you love who lives with pain.  It is also where you can go to get information about who your legislators are. 

I think that everyone needs to become an advocate for better pain care. Even if you don't have pain in your life now, you will some day, either personally or as a care provider for a loved one.  This website is a good way to get people introduced to the idea of becoming a pain care advocate. 

Selena:  Does that mean the In the Face of Pain website is going to ask us contact certain people regarding issues about pain?

Maggie:  This particular website does not do that.  The American Pain Foundation (APF) website does do this if you join the Action Network. The In the Face of Pain website can help you start from scratch and build your own advocacy effort.  It also provides links to other organizations like the American Pain Foundation which I volunteer with (Maggie is on their Board of Directors).

Through the APF Action Network, you'll be notified of advocacy opportunities based on your zip code.  You'll receive targetted emails alerting you when there is legislation in your state or local area relavent to your situation or illness.  It will also notify you of issues on the national level as well. 

Plus you'll get emails about media coverage on pain care with a link to take you right to the story so you don't have to search for it.  It will also provide a link or instructions on how you can provide feedback to the producers, author or publisher of the story. 

Selena:  So using a website like the American Pain Foundation can help alert you to where advocacy is needed, and then the new In the Face of Pain website can help you learn to advocate successfully when you do contact those people who are talking about pain care and need input from those of us living with pain or caring for someone in pain about our situation and why it is so important to address it. 

Maggie:  Right.  So if you are already an advocate, the Action Network gives you the information on where to focus your advocacy efforts.  If you aren't yet involved and are looking to become an advocate, then the Advocacy 101 section of the In the Face of Pain website will cover information on how to get started.

In the Face of Pain also teaches you to advocate on a personal level, for yourself or your loved ones, in an actual healthcare setting or emergency situation.

To be continued...


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Monday, September 26, 2011

Question of the Week:
What Could You Do If You Had Less Pain?

Did you know that September is Pain Awareness Month?

I've been so preoccupied with my recent carpal tunnel surgery that I almost missed it.  Luckily September isn't over just yet.  So I am devoting these last five days of the month to posts about different aspects of living a life with chronic pain.

In preparation for these posts, I interviewed Maggie Buckley, a board member of the American Pain Foundation and learned about the brand new In the Face of Pain website.  I'll be writing about this new resource that can help us all learn to be better advocates for ourselves and others living with pain later in the week.  I'll also be sharing some of the thoughts Maggie discussed with me about the current state of pain care today.

She also invited me to check out the "If I Lived in a World with Less Pain, I Could..." Campaign on Facebook which I joined today.  Please consider attending this event on Facebook too.  They are asking us to submit a video, photo or written statement on the American Pain Foundation wall that explains what you would be doing if you lived in a world with less pain.  (Oh, and don't forget to "like" them too.)

Watch this video to get inspired:



I have to admit that the very thought of living with less pain really brings a tear to my eye.  Living with less pain would be an absolute miracle.  I pray one day it really happens for me.  Until it happens, it just makes me sad to think about all the things I have given up or cut back on because I live with chronic pain.

Writing this list was a hard thing to do, but here is just the beginning of what I could do if I lived with less pain:
  • bowl with my husband in bowling leagues again
  • walk my dogs every day
  • exercise more
  • need less help getting things accomplished
  • do a better job of cooking, cleaning and getting things done around the house
  • drive myself to my doctors' appointments and everywhere else I wanted to go
  • enjoy doing arts and crafts project
  • get more things done in my garden and yard
  • go back to work
  • become a foster parent and/or adopt a child
In short, I would have more energy, get more done and have more fun.  And I wouldn't have to say "no, I can't do that" quite so often.

What about you?  What could you do if you lived with less pain?  While I would love for you to share your answer here or over at the OMA&P! Facebook page, I want to encourage you to get involved with the American Pain Foundation campaign by posting your answer to this week's question on their Facebook page.

Best wishes for a week with a little less pain.


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Friday, September 23, 2011

Mission 2011:
Living Life 15 Minutes at a Time

number 15 by andrea_j
One very valuable strategy for coping with chronic illness is pacing.  Inherent in this concept are the ideas of taking things slowly, focusing on one thing at a time, stopping for rest breaks, creating routines and prioritizing tasks and activities.

Sounds like a lot of work, right? Well that is what I thought too when I was first introduced to the idea of pacing as a self-help strategy for living with chronic pain and fatigue.

Then that I discovered this motto at the FlyLady website: You Can Do Anything for 15 Minutes

Inspired by this motto, I began by limiting activities to 15 minute periods by using a timer to track the time.  Once the timer went off, I stopped and rested for 15 minutes.  Then I asked myself, 'Can I go another 15 minutes?'

Initially I learned that I wasn't honoring the limits chronic illness put on my body.  Making myself stop and rest after 15 minutes really got me in touch with how my body was reacting to certain activities.  This lead me to discover which things I could do for longer than 15 minutes, which things needed to be stopped after 15 minutes and which things needed even smaller work periods--like 2, 5 or 10 minutes.

Now that I have been employing this strategy for several years, I find this strategy much easier to implement.  I am constantly refining my knowledge of my body's tolerance for certain activities.  I now know how long I can do certain things, like cooking, cleaning and doing laundry, and when I am on the verge of getting myself into trouble with increased symptoms.

I also know that when I am experiencing higher symptoms levels I need to be more diligent about limiting how long I engage in activities, in addition to adding in more rest periods during the day.

That said, my recent recovery from carpal tunnel surgery forced me to go back to a stricter approach to pacing.  I needed to slowly ease my hand back into activities after the trauma of surgery.  So I set a goal to work up to 15 minutes of continuous activity with my right hand.  Being right-handed, this was a real challenge, especially since I was naturally tempted to try and do everything with my right hand by default.

With surgery scheduled for my left hand in about three weeks, I am going to need to continue pacing myself more diligently. 

Compared to when I was healthy, my ability to do things is still markedly reduce because of chronic illness.  But I am getting more done today compared to when I was pushing myself too hard and then paying for it with flare-ups.  Pacing has really helped me enjoy a more consistent energy level throughout each day as well as over time.  Plus when I spend less time dealing with flare-ups, I have more time to get things done. 

For me, focusing on doing things for 15 minutes at a time proved to be the simplest way to pace myself.  Today I am living my best life despite chronic illness because I focus on living my life 15 minutes at a time.


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Wednesday, September 21, 2011

Wordless Wednesday:
Three Weeks Post Carpal Tunnel Surgery

Look, no scar.
But my skin is still healing from the stitches
and last week's superficial skin  infection.


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Am I Trading One Pain for Another?

back by cillenj
It's been three weeks now since my carpal tunnel surgery and I'm already back to using my right hand without any restrictions from my doctor.  I was worried about a post-operative flare-up right after surgery, but thankfully that didn't happen.  What is happening right now is an unexpected shift in my experience of my pain symptoms.

I hate to say this, but I think I may have traded one kind of pain for another.  Let me explain:

When I first started having body-wide fibromyalgia pain after a trip-and-fall accident in 2004, my attention was drawn to all of my pain, all over my body.  I was simply overcome with pain.  Initially, this was quite overwhelming at times.

But as the days have turned into months, and the months have turned into years, my perception and experience of my pain has changed.  It seems my brain just can't continue to be focused on all my pain at once.  So instead it picks the most painful areas and registers those as being in pain.  I think the rest of my pain has been translated into an overall feeling of overwhelming fatigue, which I guess makes some sense since living with chronic pain is very tiring.

Mind you, this is just a trick my brain plays on me.  My body-wide pain is still there and it doesn't take much for me to be reminded of it. Just a simple touch can bring it back into my awareness.

But now that I have removed the source of my right hand pain, the compression of my median nerve, it appears my brain is readjusting its pain barometer.  As a result, it feels like my brain is reevaluating which body parts should be labeled as priority pain centers. All I know for sure is that my balance has been upset and now there are areas really hurting that haven't been on my radar for a while now.

So far, prime candidates are my left hand, which is really bothering me even though I've had carpal tunnel symptoms there for the same amount of time.  I can only surmise that with the focus off my right hand, my brain is paying much more attention to my left.  My neck is also screaming out in pain now and my low back is very unhappy too.

Ugh.

Ordinarily I would wait this out and hope *fingers-crossed* that everything would get settled back down with time.  But I have scheduled surgery for my left hand on October 12, which means I am going to confuse my body and brain even further.  I'm counting on my body focusing on the post-surgery increase in pain in my left hand for a week or so afterward.  What happens after that will be anyone's guess...

Don't get me wrong.  I am enjoying my right hand and its more symptom-free status.  I welcome being able to use both of my hands to garden, cook and do arts and crafts more as the result of less pain.  I'm even hoping that maybe, just maybe, a decrease in hand pain might help decrease my overall pain level. (A girl can dream, right?)

Where ever I end up down the road, right now successful carpal tunnel surgery seems to be causing some kind of  pain perception shifting effect throughout my body.



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Monday, September 19, 2011

Question of the Week:
Can You Feel Fall Coming?

Personification of Autumn (Currier & Ives lith...Image via WikipediaThis past week has been full of more aches and pains for me, none of which are related to my recent carpal tunnel surgery.  I thought this was quite odd until I looked at the calendar and realized that Fall begins on September 23rd.

Seems my body knows when the seasons are about to change.

Now I am not a big fan of Summer heat.  Honestly, from June to September I am spending a lot of time indoors with the air-conditioning on to keep me cool.  Plus I've stopped traveling in the Summer to avoid heat-related problems associated with my dysautonomia.

All that said, there is something more to Summer than the heat that keeps my aches and pains at bay.  Too bad I can't bottle it.  I bet I could make a lot of money selling it: Summer Breeze--the seasonal cure for your aches and pains!

All kidding aside, I need to be more careful about paying attention to messages from my body.  Cold and damp weather can bring on more pain symptoms and it's frustrating because I simply cannot prevent these weather-related flare-ups.  All I can do is compensate with more rest and cut back on activities.

So what about you?  Have you noticed any recent changes in your body?  Do you think it is due to the upcoming change of seasons?  And for my readers South of the equator, I'd like to know if transitioning from Winter to Spring is helping your body feel better.

Leave your answer to the Question of the Week here as a comment or head over to the Oh My Aches and Pains! Facebook page to join the conversation there.



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Friday, September 16, 2011

Mission 2011:
Friendship Fresh Start

Forget-me-not by chrissi
I admit I have been obsessing over a friendship that is stalled.

I say stalled because there has been minimal contact for most of 2011.  The last time I saw this friend was almost a year ago.  The last time I talked to this friend on the phone was about four months ago.

The Way Things Were

When I first started living with chronic pain and fatigue, my friend made the effort to visit me frequently.  Since I was limited in my ability to drive, she came to see me.  In between visits, there was lots of interaction via phone, email and social networking sites.

In short, I felt connected, included and loved.  I felt like my friend really "got it" about how chronic illness was changing my life and I felt thrilled that this wasn't going to be an obstacle to our friendship.

Life Changes

Then my friend starting changing her life about two years.  She wanted better things for herself and I wanted this for her too.  I don't begrudge any choices my friend has made, even when those choices meant there was less time for me and our friendship. I switched friendship gears and focused on being patient, supportive and understanding.

The Problem

Unfortunately,  during this change I have not feeling very supported or understood anymore.  For example, coming to my place for a get-together is now inconvenient or a problem.  Plus my chronic illness lifestyle (yes, it's a lifestyle, one I didn't choose and don't like) now appears to be an impediment to our friendship.

What hurts is knowing that my friend continues to make time for a lot of different people, places and things.  It just seems like she doesn't have time for me.  I was expecting a call or message from her after my recent surgery, but she didn't contact me.  I felt very disappointed.

Trying to Sort It Out

I'm not a person to take friendships lightly, and certainly not when there are many years invested in a relationship.

I want to believe that this is a phase: a rough patch or a bump in the road.  I also want to attribute this to something I'd like to call chronic friendship burnout.  It's a phenomenon that occurs when you realize your friend's chronic illnesses aren't going away and are hit with compassion fatigue.  I mean, we all muster the troops when someone gets sick, but how long can you maintain that level of support when someone's illness goes on, and on, and on and on!

A Fresh Start

This week I found myself debating whether to try and reach out to this friend again.  As I was going over the pros and cons in my head, I realized that I had another alternative.

There was another friend I hadn't heard from lately.  Like me, she lives with chronic pain and chronic illnesses.  We met in dog training class.  Through that experience, we learned that we share many of the same chronic illness challenges and lifestyle.

I know that I hadn't heard from her not because she was busy, but because she was overcoming by her illness, just like I am a lot of the time.

So I decided to call her instead.

She was so happy to hear from me.  She said she had been thinking about me and I must have responded to her good thoughts about me.  We spent 90 minutes catching up on the phone--something of a record for me!  We made some tentative plans to get-together one afternoon and walk our dogs at a local park 10 minutes from my house, a plan that fit with what I am able to do.  Most importantly, I hung up feeling appreciated, supported and understood.

Final Thoughts

I don't want to imply that if you are sick, all your friends should be sick too.  Sick friends do have an advantage over healthy ones in terms of understanding your situation.  But healthy friends have the ability to help you do more if they are so inclined to assist you.  Ideally you have a mix of both in your life, although the impact chronic illness has on all your friendships definitely cannot be overlooked.

There is a saying:  Make new friends, but keep the old, One is silver and the other gold.  I'm not sure where my old friend and I are going.  Spending time worrying about it only makes me sad. So why not, in the meantime, focus my energy on growing a friendship with a new friend.  After all, I'll still be here if my old friend wants to reconnect; chronic illness makes sure I am not going anywhere fast. 

For now I'm going to try a friendship fresh start.


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Thursday, September 15, 2011

Do Good:
How Facebook Makes It Easy

tantra // 'to sum up'Image by TheAlieness GiselaGiardino²³ via Flickr

Thanks to Walgreens for sponsoring my writing today. Help Walgreens help others! Visit their Facebook page here to learn about their charitable partners and decide which cause Walgreens will donate to with a quick vote.


I think an integral part of giving yourself a fresh start is getting back to what is most important to you.

One thing that is very important to me is finding ways to "do good" and help other people.  Doing good was the main focus of my career as a social worker.  Even though I can't participate in that career any more due to chronic illnesses, there are still things I can do to make a difference.

In my pursuit to "do good" despite living a life with chronic illnesses, I've discovered virtual volunteering, which I have shared with you before here.

Today I want to focus on how many companies are turning giving into a digital affair by bringing charitable campaigns to Facebook.

I first got involved with giving through Facebook with the Causes application.  In 2009, I set out to raise money for The Gerald Keerbs Memorial Fund that I set up through the Alzheimer's Foundation website. In tandum with this site, I also created a donation portal on Facebook using the Causes app.  Then created a birthday wish for donations to be made in lieu of presents.  I promoted both sites, encouraging people to make micro-donations, letting them know that even $1 could make a difference.

Between the two sites, I raised $140 dollars for Alzheimer's research and programs.  Not a bad effort considering the tough economic times (there is a 12% jobless rate in my home state alone!)

Since then, I have stumbled upon many different charitable campaigns that include Facebook tie-ins, like the Pepsi Refresh Project, the Vivint.GivesBack Project, Chase Community Giving and StandUp2Cancer.

Recently Walgreens has started their own Facebook giving campaign.  They are asking us to "Like" their Facbook page and then vote to donate flu shot vouchers to one of five different charitable organizations.  The flu shot vouchers will be given to people who are unable to afford a flu shot because of a lack of health insurance or income.

The organizations include the American Diabetes Association, the National Urban League, Americares, Feeding America and the League of  United Latin American Citizens.  The good news is that all these charities will benefit from this campaign--votes help decide how many flu shot vouchers go to each organization.

As a person living with diabetes, I can really get behind this charitable effort.  Flu shots are an important way to prevent getting the seasonal flu virus and reduce complications that often arise when a person with diabetes gets sick with the flu.  So I'll be voting to give the most vouchers to the American Diabetes Association. 

Won't you join me? You'll need to act quickly! Voting runs from 9/08/11 through 10/8/11.

Don't forget to help Walgreens help others! Visit their Facebook page here to learn about their charitable partners and decide which cause Walgreens will donate to with a quick vote. I was selected for this sponsorship by the Clever Girls Collective, which endorses Blog With Integrity, as I do.


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Wednesday, September 14, 2011

Wordless Wednesday:
Fortune Cookie Says... #iiwk2011

Image by arkitekt


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Tuesday, September 13, 2011

One Way You Can Encourage a Chronically Ill Friend
#iiwk2011

Most healthy people don't realize how many normal, everyday things a person living with chronic illness has had to give up. Most healthy people don't understand how much loss a chronically ill person endures when they are robbed of the pleasant things in their lives due to pain, fatigue and other symptoms.

Being the healthy friend is also difficult.  In the face of illnesses that just don't get better or end, perhaps you've gotten discouraged.  Maybe the time and energy spent on your friend has diminished over time too. After all, you have your life to live too and there are many things competing for your time and attention.   

But you still want to help, right?

This is a gentle reminder about how much it means to your sick friend when you take just a few minutes out of your busy and hectic life to do something nice for them.  

So take this moment to take a deep breath.  Then commitment to renew your efforts to help.  Just wipe the slate clean and start fresh.  Forget about the past and start again, today, helping your sick friend.

This is where the video below will come in handy. 

One of the many things you can do to help your sick friend is to help them discover a new hobby or interest when their old ones aren't possible anymore.

For example, I can certainly relate to having to switch from backyard gardening to container gardening (which I write about over at The Seated Gardener.)  This new pursuit started when an occupational therapist challenged me to find a way to keep gardening despite my chronic pain. 

Another example is how my friend Cyndi turned me on to blogging by challenging me to a friendly blog-a-day competition back in May 2009.  Now blogging is one of my new passions.

This video has some great ideas and suggestions.  As a friend to someone who is chronically ill, it might get you thinking about fun new ways you can encourage your sick friend to connect and enjoy life.  What greater gift could there be than helping a friend in such a thoughtful and meaningful way.

Enjoy!






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Monday, September 12, 2011

Question of the Week:
Are You Ready to Start Fresh?


Wow, I am so lost in my own little world right now.  I've been distracted, irritable and completely disorganized---and I know it!

I've been really struggling to get back on track for months now, and then feeling bad when I can't quite seem to get there...

The latest example of my waywardness was my worry today that I had missed Invisible Illness Week 2011.  I hoped and prayed that I hadn't, since it is really THE week that helps spread awareness that just because you don't look sick doesn't mean you aren't sick.  Since I can pass for healthy, i.e. I don't have a visible disability, lots of people can't tell I deal with multiple chronic illnesses just by looking at me.

Thankfully I haven't miss my favorite awareness week, which starts today.  And I both love and can relate to the theme:  Deep Breath, Start Fresh.  Because, well, I could really use a new beginning!

Check out this video that explains this year's theme:





So what do you say? Have you been knocked off course and need an opportunity to get back on track like me? Want to take a deep breath and start fresh with me? Then let's do this together...

If you are up for the challenge, leave me a comment to let me know you'd like to join me. And let me know how you plan to celebrate Invisible Illness Week 2011 too.  As always, I love reading your comments here or over at the OMA&P! Facebook page.

By the way, have you noticed my fresh start here at Oh My Aches and Pains?  I'm loving my new blog design courtesy of DreamUp Studios.  You'll want to take a few moments to watch my *new* blog header animation.  It features a virtual representation loosely based on me that I like to call Dot (as in the . between ohmyachesandpains and info in my blog URL.)





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Wednesday, September 7, 2011

Wordless Wednesday:
My Carpal Tunnel Surgery Photolog

My right hand after surgery

A healthy nerve is light yellow.
My median nerve was described by my hand surgeon as being eggplant color.

See the fake bake orange color on my right hand?
That's from the pre-op skin cleaner.

Three days of antibiotics.

I couldn't get a child-proof cap opened with one hand,
so some of my pills got put temporarily into small Gladware containers.


video

This is my hand exercise, 4 times a day for 5 to 10 minutes.


I had BIG pain in my index finger the day after surgery.
Fortunately now it is gone.

The post-surgical bandage came off Sunday.
Can you see the blurred writing on my arm?
It said YES and had an arrow pointing to my right wrist.
There also seems to be a blue line near my incision site.
The stitches come out on 9/16.

For now I cover the stitches up with a gauze pad and Coban self-adherent wrap.


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Tuesday, September 6, 2011

Question of the Week:
Are You in the Inside Out Club?

2K 2P Inside Out SocksImage by PrincessFroglips via FlickrI've done some pretty crazy things when I'd been extremely fatigued or in a heck of a lot of pain. One of those quirky things I do is put my clothes on inside out. Of course I don't notice when I make this faux pas; it's my husband who catches my mistake and asked me, "Oh, are you feeling okay?"

Lucky for me, I have a good sense of humor so his question always makes me laugh a little at myself.

Well after my carpal tunnel surgery last Wednesday I think I topped myself.

I made my discovery on a trip to the restroom. After quite a struggle getting my pants down with just one hand, I assumed the position. It was then that I glanced down at my underwear and realize that I had put them on inside out. It it seems that I was so nervous the morning of my surgery that I wasn't paying attention when I got dressed before heading to the hospital.

The chuckle my discovery inspired was a welcome respite from the stressful and painful events of the day.

Sometimes you just have to laugh at how ridiculous things can get when you're dealing with chronic illness. I often think my experiences are so far out of the norm that only a fellow person living with chronic illness could understand what I'm going through. It's amazing how many times I employed the "fake it to make it" principle each and every day. Chronic illnesses leave me in a place where I am struggling to fit into a life that most normal people take for granted. I often feel like an alien from another planet -- an alien that looks like everyone else around her.

This week I'm wondering if you feel the same way I do. Maybe you don't put your clothes on inside out, but I bet there are quirky things you do too when you are struggling with more pain or fatigue. I'm also guessing you can relate to feeling like someone who doesn't fit in amidst all the healthy, normal people in your life. So leave me a comment and let me know if you're a member of my Inside Out Club.

Oh, and don't forget to head over to the Oh My Aches and Pains! Facebook page to join the conversation. I am so excited that over 300 people now 'like' my blog's page there. Did you know that these small, little things in my life that bring me joy and inspiration, which motivate me to keep writing? Thank you so much for that.


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