eader

Monday, January 30, 2012

Do You Know More Than Your Doctor?

Welcome to another edition of the Question of the Week.


As I am getting ready to start Hepatitis C (HCV) treatment, I've been running across some pretty interesting pieces of information that I think will make my treatment experience more successful. This information has come to me courtesy of the websites, Facebook groups, listserves and folks on Twitter I subscribe to or follow who review and report on medical research and medical news.   And I find myself feeling awfully grateful towards them for bringing these things to my attention.

With So Much Information, Can Your Doctor Keep Up? 

That said, I can't help but feel some disappointment that my doctors aren't the ones sharing this information with me.  But I guess their busy schedules don't leave them with enough time to keep up with their medical journal reading.  Or maybe it is the fact that, with communication advances like the Internet, there is just so much more information being shared from all over the world that my doctors just can't keep up.  Either way, it sort of leaves me in the awkward position of knowing more about new research findings than my doctors.

So today I want to:
  • share a recent discovery, 
  • talk about where to go to find illness and treatment-related information and 
  • ask if you too know more than your doctor.

My Discovery About Vitamin D and HCV

Several years ago, I was diagnosed with a low Vitamin D level by my endocrinologist. Since then, I have been taking a Vitamin D supplement which has helped me get my Vitamin D level back into the normal range.  Along the way, I have found that I am getting sick from colds, flus and other bugs a lot less and, when I do get sick, the symptoms of those illnesses are much less intense.

Today I was alerted by a HCV group I belong to on Facebook about a research study on HCV and vitamin D.  About 84% of the HCV+ subjects in this study had a vitamin D deficiency.  The researchers gave vitamin D supplements to these patient who were all undergoing HCV treatment.  They found that boosting vitamin D levels back into the normal range (32 ng/mL) improved a patient's chances of getting a sustained virological response (SVR) to treatment from 42% to 86%.  In addition, only 8% of patients taking vitamin D supplements relapsed after treatment compared to 36% of patients with low vitamin D levels who were not taking a vitamin D supplement.

That sounds pretty impressive to me. So I'm taking a copy of this research article to my next appointment and discussing it with my hepatologist.  If he agrees with the findings, I am going to request that he monitor my Vitamin D level closely during treatment.

Finding the Information That is Out There

I know this kind of information is out there for other illnesses and conditions too.

In fact, I just read a book about cancer treatment (that I will be reviewing later in the week) that talks about using medications and supplements to synergistically enhanced the effectiveness of conventional cancer treatments.  According to the author, this "cocktail approach" to treatment has produced some pretty amazing results.

If you live with fibromyalgia, myalgic encepholopathy, chronic fatigue syndrome or multiple chemical sensitivities, a group called Co-Cure compiles this kind of information for you from a wide variety of reputable sources.  Visit their website and check out the research updates and reading room pages.  You can also subscribe to updates via email by going to the list operations page.

Besides books and trusted medical websites, another place to search is Pub Med.  Pub Med is the U.S. National Library of Medicine MEDLINE service that contains more that 21 million citations for biomedical literature.  Check out their Quick Start guide for video tutorials, FAQs and links to learn more about searching for information on Pub Med.

Sharing the Information with Your Doctor

Once you have the information, it's time to talk with your healthcare provider. You'll need their help and medical expertise to discern if these new medications and treatment approaches are right for you and your specific situation.  Be sure to take a copy of the article with you to share with your doctor.

I think it is a real litmus test of your working relationship with your doctor when you share information with them.  So don't let fear stop you.  You'll gain valuable information about your doctor's commitment to your good health and well being by sharing information with them.

When I have received a less than supportive response, I've taken it as a sign that it was time to find a better doctor.

So do you know more than your doctor?  What trusted resources do you use to keep on top of new medical information? Do you feel comfortable sharing information with your doctor?  Do you have any advice for others about sharing information with health care providers?

Please share your response on the Oh My Aches and Pains! Facebook page or below in the comments section.




Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, January 27, 2012

Hepatitis C: The Facts

I was so excited when I was recently approached about hosting an infographic on my blog.

I asked the designers to create a Hepatitis C awareness infographic and I think they did a bang-up job.  I am proud to display it here on Oh My Aches and Pains! and hope it goes a long way towards educating everyone about the risk factors for HCV infection as well as the impact HCV has on individuals, families, the health care system and our society as a whole.

How This Infographic Relates to Me

As I reveal last week in my vlog, I contracted Hepatitis C from blood transfusion I received in 1988.

I actually developed acute Hepatitis C in August 1988, with jaundice, nausea, vomiting, fatigue, fever and abdominal pain.  It took me several years to recover from the fatigue I experienced from acute Hepatitis C.

I am one of the 85% who have gone on to develop chronic Hep C infection.

As noted above, I became infected near the peak of Hep C infections in 1989.  This was before there was a blood test to screen the blood supply for Hep C.  I knew there was a risk of contracting what was then called non-A non-B Hepatitis from blood transfusions when I signed my cancer treatment consent form in 1988.  I was not in a position to refuse blood transfusions due to the nature of the cancer treatment that I received. It was a risk I needed to take to beat leukemia.

Since 1992, the risk of getting Hep C from a blood transfusion has dropped to less than 1 in 2 million.

How This Infographic Relates to You

I strongly encourage you to get tested for Hepatitis C if you identify that you have risk factors for Hepatitis C.

Knowing you have Hepatitis C is key to living a long and healthy life with it.  If you know you are HCV+, you and your doctor can discuss healthy lifestyle changes, monitor disease progression and take steps to manage the infection.  This can go a long way to preventing or delaying the onset of chronic liver disease, cirrhosis and liver cancer.

Plus knowing you are HVC+ might encourage you to make choices that will prevent the spread of Hep C to others.


View it full size on Photobucket.  Click the image below:



Photobucket



This infographic was made possible by http://www.foresthc.com/.


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Thursday, January 26, 2012

Help Stop the Global Crisis of Undertreated Pain

I just discovered a new documentary titled Life Before Death which discusses the global crisis of undertreated pain and wanted to share it with you all today. 

Please take a moment to view the trailer below.  Then head over to www.treatthepain.com to become part of a global effort to bring more pain relief to the world.  Plus you can help by liking Treat the Pain on Facebook, following them on Twitter or clicking the Do Something tab on their website.





I find this topic incredible relevant to me right now. As I have mentioned, I am looking for a new pain management doctor and I am legitimately worried about my continued access to opioid pain medications, medications that are making a real difference in the way I manage my fibromylagia pain. 

Before I started seeing my last doctor, I was never offered opioid pain medicine to manage my pain.  For 7 years I lived with severe pain on a daily basis and had to figure out ways to "grin and bear it," primarily through self management techniques.

I am grateful that opioid pain medication is now a part of my overall pain management strategy.  That said, it is only one piece of the puzzle and it certainly does not take my pain away, only reduces it.  No, I still need to keep employing all the other strategies at my disposable to manage my pain on a daily basis.  It is just a bit easier to do so when I have pain medications as part of my arsenal.

My situation is not unique.  Unfortunately, this is a hard, cold reality for many of us who are living with chronic pain:  we all are living with more pain than we should.  I would love to see that change in my lifetime.


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 25, 2012

I Can Do Hard Things

Welcome to Wordless Wednesday,
where the focus is on visual images.

Here is the second in my series of "Inspiring Words" images.



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Tuesday, January 24, 2012

Why Don't Infertility and Menopause Count as Forms of Birth Control?

Welcome to another edition of the Question of the Week.

Let me start by saying that I need to vent because I am feeling really baffled, frustrated and sad.

You see, I am once again getting a mixed message from my health care providers.  On the one hand, they have diagnosed me with infertility and, more recently, the start of early menopause.  On the other hand, they are insisting that I use two forms of birth control while undergoing Hepatitis C treatment.

Now I get it that the drugs I will be taking are horribly toxic to a fetus and can cause serious birth defects.  But come on!  If I can't get pregnant under normal circumstances because my ovaries have been destroyed by the chemotherapy I received 24 years ago to treat the blood cancer leukemia, what makes them think that Hep C treatment is going to magically change that?  I mean, if G-o-d was going to intervene and help me conceive a child, don't you think G-o-d would have the good sense to do so under more ideal circumstances?

Thing is, this isn't the first time I have been baffled by what I perceive to be a contradictory message.  Nope, I have been advised to continue using birth control several times since being diagnosed with infertility.  Which makes me wonder Do I not understand what the word infertile means?  Because, silly me, I keep thinking it means I will never ever get pregnant or be a birth mother because my ovaries are fried.  Right?

But let's say for a moment that I am wrong.  Let's say they're right and hypothetically I could get pregnant...  On second thought, forget it.  I know they are wrong because I already tested this hypothesis out, and sure enough, I could not get pregnant after months, no, years of trying.  Heck, my ovaries are so burnt to a crisp that I couldn't even get a fertility monitor to predict when I was ovulating because, well, I wasn't.

All of this double talk is really dredging up a lot of old, painful feelings.  The hardest thing I have ever had to accept is that I can't fulfill my life-long dream of giving birth to a child.  And every time I have to revisit this subject, it is just like pouring salt into old wounds.

O.K., so enough about me.  Don't worry, I'll be fine...eventually. And yes, I will comply with their request to use two forms of birth control during Hep C treatment, even though I know I will not be getting pregnant during this lifetime.

Let me hear from you now.  Have you ever been told contradictory information about your chronic illnesses?  How did it make you feel?  What did you do to deal with the situation?  Did the fact that this happened to you change how you felt about your health care providers?

Leave a comment below or head over to the Oh My Aches and Pains Facebook page to share your story.



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Monday, January 23, 2012

My Discovery For Getting Fit with Dysautonomia & Fibromyalgia: Seated Exercise Videos

Discover Exercise from a Seated Position

After years of struggling with exercise since becoming a ChronicBabe, suddenly everything clicked when I recently read a statement on a fellow POTSie's blog that said (and I'm paraphrasing here) "When you have dysautonomia, all your exercise should be done in the seated position." 

What a Well, no duh, why didn't I think of that? moment!  After all, I learned last year at the Mayo Clinic in AZ that when I am standing still, my blood pressure goes all over the place, bouncing from high to low and back again. I can only imagine what happens when I try adding movement to standing...

Since this discovery, I've decided to make incorporating seated exercise into my weekly routine one of my goals for 2012.  So I went to YouTube looking for some simple seated exercise videos that could get me started.  What I found is a variety of videos that range from easy and beginner to experienced and challenging.

My Top Four Picks

My doctor advised me to start with just a few minutes of exercise three times a week and slowly work up to more.  So I'm starting with this fun and energetic seated dance video set to Hawaiian music which utilizes a technique called the MUVE method:





I've heard that Zumba is the latest fitness craze and I have been feeling a little left out since an hour dance exercise class is so not practical for me.  So imagine my delight when I found this Zumba Gold chair routine that I can do from the comfort of my home.





I'm loving Coach Nicole from SparkPeople.com and her calorie burning Seated Cardio Workout.  This is definitely a more advanced workout that I am aspiring to when my fitness level improves.  She's also recorded a Seated Upper Body Toning Workout and a Seated Abs Workout too.





Jackie Tally, another new favorite, has several different seated exercise videos on her Smart Moves YouTube channel.  My absolute favorite is a routine she set to the song Chicken Fat, a song I remember fondly from my childhood (I am not able to embed it here, so you'll have to head to YouTube to see it.)  It seems like a fun way to start the day with exercise!





Honorable Mentions

Mike volunteers with patients living with multiple sclerosis (MS), teaching a seated exercise class in a local hospital.  Skip the first minute or so of these videos to get right to the easy five minute seated exercise routines that he teaches to his clients.  Then check out the last link for more information about his Move with Mike class.

Seated Exercise Program 1
Seated Exercise Program 2
Move with Mike - Seated MS Exercise Program

I love yoga.  Unfortunately, my body with fibromyalgia and chronic myofascial pain doesn't find traditional yoga very relaxing or helpful anymore.  That is, until I discovered two seated yoga videos that just work better for me in my current state of health.


Chair Yoga
Chair Yoga Refresher


A Tip for Watching These Videos Anytime

Love these videos, but wish you didn't have to go to YouTube to watch them?  Guess what?  I discovered that RealPlayer lets you download videos from YouTube to your computer and covert them into several different formats, including MP4, WMV and RealVideo.  You can also burn them free of charge to a video CD using the free version of RealPlayer.  If you upgrade to RealPlayer Plus, you can burn these videos to DVD.


DISCLAIMER:  This post is intended to convey general health information and is not a substitute for professional medical advice. Please consult your health care provider before beginning any exercise program.


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Thursday, January 19, 2012

Me and Hep C:
How I Became HCV+

The dragon, Hepatitis C




video



To learn more about risk factors for HCV infection, please read the fact sheet Frequently Asked Questions About Hepatitis C courtesy of the HCV Advocate website.  I suggest downloading and printing this fact sheet, then taking it with you to your next doctor's appointment to help you begin the discussion about HCV with your health care provider.

To find an anonymous HCV testing facility in your community, call or visit the website for your local county health department or call your local 211 information and referral line (USA only.)

You can also purchase home HCV test kits, like this one from Drugstore.com:




Related articles


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 18, 2012

Everything Will Be Alright

Welcome to Wordless Wednesday,
where the focus is on visual images.

Here is the first in my series of "Inspiring Words" images.



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Tuesday, January 17, 2012

Is Chronic Illness Making It Hard for You to Believe In Yourself?

Welcome to another Question of the Week.

Several people in my social circles have been writing and talking about self esteem lately.  The conversations have run the gamut, from "I admit I care about what other people think of me." to "If I can do it, you can. I believe this with all of my heart."

What I have taken away from these conversations is a renewed appreciation for my ability to believe in myself.  Let me explain...

Chronic Illness Can Take a Toll...

I think chronic illness can take a real toll on your sense of self.

I admit there have been plenty of times where I have doubted my judgement, my view of reality and my self-worth when faced with all the baggage that comes with a life filled with ongoing health problems. Those moments have often come after a difficult encounter with another person, like a less-than-helpful medical professional or an uneducated healthy person, who has just questioned whether I am truly ill and/or in need of treatment.

I just don't get why these folks need to make it hard for me for no apparent reason. 

Then there are those moments when the loved ones around me spew out that stray hurtful remark or judgmental comment about my chronic life.  It's those moments that can slap me right in the face and send me reeling.  I'm always discouraged by how I can suddenly feel all alone in my struggles, like no one understands or can support me.

...But It Can Also Change Your Perspective

I love how my friend who cares about other people's opinions also said, "I may not let it hurt me, or change my course- and certain people's opinion of me is insignificant- but, in general, of course, I care."  As her peer, I appreciate the maturity and wisdom in that statement.  I too feel the same way: I care about my interactions with other people, but I also choose if I let someone else's opinion of me hurt me, change my mind or hold any weight.

Then I realized that living with chronic illness for the last 7 1/2 years has helped me believe in myself more.  I've achieved this by learning to take better care of myself by unselfishly putting myself first.  Most of the time I don't let what others say or do ruin my day or my mood, because that kind of stress isn't good for me, my chronic illnesses or my efforts to manage them.

When it comes right down to it, what I think, feel and believe are the most important things to me.  Period.

So What Do You Think?

Is chronic illness making it hard for you to believe in yourself?  What specific situations or people make it difficult for you? What do you think you'll need to do to turn this around? How can I help make that happen for you too?

Please share both your struggles and successes in this area by leaving a comment here or over at the Oh My Aches and Pains! Facebook page.



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Thursday, January 12, 2012

Bits and Pieces: Overwhelmed with Health Care at Day 12

This new year is only 12 days old and I am already getting overwhelmed by all the health care tasks on my plate.  Good grief!

On Monday I shared about the flare-up that has followed me into this new year.  Well, I went for a medical procedure Monday that only made it worse, yet again. 

I had no idea how much pain I was going to be in.  It hurt so much that I asked the doctor to stop what she was doing at the halfway point and convinced her to reschedule the second half for another day.  Thank goodness Robert drove me to this appointment, as I was in too much pain to drive myself home. 

While the pain caused by the procedure subsided in a few hours, being in that much pain reactivated my hip and low back pain and I have been miserable all week.  Thank goodness for my flare-up kit.  It's making a real difference in easing my pain and helping get through this ordeal.

Tuesday's BIG appointment with my hepatologist went really well.  I got a nice surprise too.  Seems that my viral load went down, from 24 million to just under 10 million.  I attribute the drop to the drug metformin, which I asked my endocrinologist to add to my diabetes care plan.  You can read more about the anti-Hep C effect metformin has here

At that appointment I passed another milestone: right now the paperwork needed to start Hepatitis C treatment is getting completed.  I anticipate that I will begin treatment in February.  But before then, my schedule is packed with additional medical appointments and things I need to get squared away before I go to battle. 

First of all, I need to get an eye exam before treatment.  With some nudging, the eye clinic staff was able to squeeze me into an appointment at the end of the month.  Over the past several weeks, I've also persistently pursued and obtained an appointment with a cardiac arrhythmia specialist for next week.  I am relieved that I will have a doctor on my team who can troubleshoot any potential heart-related complications from Hep C treatment. 

And at my dental cleaning yesterday, the hygienist found a cavity that I am choosing to get filled right away too. 

I wanted to see my pain management specialist too before my life becomes all about Hep C treatment, but I learned yesterday that she has moved to Fresno.  What a shock and disappointment that was!  After the shock wore off, I found myself a little miffed that she hadn't notified me of this huge change or attempted to facilitate the transfer of my care to a colleague. 

It seems like, once again, I have been dumped!  Aargh!

I found her completely by accident, a happy and fortunate accident.  Finding a replacement is going to be really hard--she was the only doctor I saw that was willing to consider all pain medication options for me, including narcotics.  What she prescribed for me is working so well during this current flare-up.  I need a new pain management doctor who will continue to provide me with this real and much needed pain relief.

Despite all the craziness, I haven't completely lost my cool.  In fact, I kind of feel lucky to have so many distractions keeping me from getting worried and stressed about the start of Hep C treatment just a few short weeks away. 

Isn't it funny how the Universe works sometimes...


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 11, 2012

Product Suggestions For Your Fibromylagia Flare-Up Kit


You can click on any item in this slide show to be taken to 
Amazon.com for more information about the product.  
Buy any of these products and you'll get 
free Super Saver shipping on purchases of $25 or more.




Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Tuesday, January 10, 2012

Why I've Decided to Treat My Hepatitis C Infection Now

Hepatitis C is often called the dragon.
I guess my new occupation is
"dragon slayer."
So today is THE big day.  Today I go talk to my hepatologist about treating my chronic Hepatitis C infection.

I admit I am feeling a whole bunch of things as I write this, from anxiety and fear to determination and courage. You know what?  I'm O.K. with it.  I bet I am going to feel a whole gambit of emotions by the time I cross the treatment finish line six months from now.

For you, my readers, I wanted to mark this occasion, so I filmed a short video blog or vlog in which I share some of my thoughts about why I am choosing to treat my Hepatitis C infection now. 


video

As you heard, I've got a lot of ground to cover. 

I plan to record more vlogs to explain what Hepatitis C is, the risk factors for contracting Hepatitis C and the impact it has on the lives of those with live with it.  I also want to share bits and pieces from my own personal story of living with and fighting "the dragon." 

Most of all, I am going to be using my vlogs to document my journey through Hepatitis C treatment.

In the meantime, I encourage you to visit the HCV Advocate website for more information about Hepatitis C.  You can also read more about the correlation between HCV and type 2 diabetes by reading the article Surprising Findings about Hepatitis C and Insulin Resistance over at the Science Daily blog.


Through this experience, I would like to become a better advocate for people living with Hepatitis C, as well as encourage those with risk factors for HCV to get tested, find out their status and start taking extra special care of their liver and their precious health.



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Monday, January 9, 2012

Baffled by a Fibromyalgia Flare-up That Came Out of Nowhere?

Welcome to another Question of the Week.

Right now, a lot of us living with chronic illness are experiencing symptom flare-ups that seem to have come out of nowhere.  These flare-ups are sure making our lives miserable.

I've been struggling with new onset severe low back and hip pain since December 23rd.  It feels like it's turning into the pain that just won't go away!  So after I finished being perplexed and puzzled, I put on my thinking cap and started investigating it like a fibromyalgia scientist.

What?  You don't know how to be your own fibromyalgia scientist?  Here, let me show you:

My Observations

I had immediate pain after the scooter ride on December 23.  I underestimated that new pain and continued running errands later that evening.  I also spend the 24th doing all the Christmas tasks I put off until the last minute. That resulted in the pain getting much worse for the following two or three days.

On the 25th and 26th, I was in full flare-up management mode, resting more, cutting way back on my activities, taking my flare-up medications and using ice and heat to manage the pain.  With these efforts, the pain started getting a little bit better by December 27th.

Then the pain started getting much worse around December 29th.  On December 30th, I woke up with a sore throat and felt feverish.  I immediately cut back on my activities, started resting more and starting taking my flare-up medications again.  After a few days, I noticed that the pain started improving as I fought off whatever viral illness I had.

By January 6th the pain was much more tolerable: not completely gone but resolved enough that I started adding activities back into to my schedule.  I decided I was ready to help my hubby take down our low-altitude outdoor holiday decor on Saturday January 7th.  That night and the following day my low back pain came roaring back with a vengeance.

So, for the third time, I was back in flare-up management mode...

My Analysis

  • Sometimes you have no idea that something is going to flare you up, like my bumpy scooter ride. The good news is you can take this new knowledge and brainstorm ways to prevent it from happening again.

  • There are also some flare-up triggers that are completely out of your control, like getting a cold or the flu or the weather becoming cold, damp and miserable.  If a flare-up seems to come out of nowhere, these might be the culprits.

  • Once you are flared-up, making the decision to push yourself instead of cutting back will definitely make your flare-up worse.  You have to decide if pushing is worth the payback AND accept the consequences.

  • It usually takes longer to recover from a flare-up that we expect.  It is hard to be patient, but jumping back into the swing of things when you first start to feel better might result in a relapse of your flare-up symptoms.

My Conclusions

What can I say?  This has been the perfect storm of flare-up causes and exacerbators, some out of my control and some definitely within my control, all jumbled up together.

In retrospect, I could have made some different choices which might have gotten me out of this flare-up cycle by now.  Ah, but I live and learn.  So now my number one priority is to get this flare-up calmed down and under control in the next two weeks, barring any further complications out of my control.

(Two weeks might seems like a long time, but considering that this pain has been around for the last 17 days, maybe I should revise my plan to three weeks!)

What About You?

Now that I have shared my method for being a fibromyalgia scientist, do you have a new understanding of your current flare-up symptoms?

I'd love for you to share what you have discovered as well as how you cope with painful flare-ups.  As always, I welcome you comments here or over at the Oh My Aches and Pains! Facebook page.

If you are having a hard time implementing my suggestions, feel free to drop me a line using the Contact Me link under my blog header.  Perhaps together we can figure out the cause of your flare-up and some steps you can take to help you get back into control of your fibromyalgia self-care.


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Friday, January 6, 2012

A Year In Review:
Some of My Best Posts from 2011

This past week I looked at what posts were popular in 2011 here at Oh My Aches and Pains!

Since I mostly write from my daily experiences, it is always interesting to me which posts strike a cord with you and which ones fall a little short.  I am truly surprised when some of my posts become really popular.  In fact, at this very moment in time, the post that receives the most attention on the Interwebs, with 2,634 pageviews, is one I wrote back on December 29, 2010 titled Fibromyalgia Flare-up? Here's What To Do...

In the process of putting my 2011 review together, I considered  three different variables:
  1. posts with the most comments,
  2. posts with the highest number of pageviews as tracked by Blogger and 
  3. posts I felt didn't get the attention they deserved.  

I had fun putting this together for you and I hope you enjoy it.  I also believe it is a pretty good sample of some of my best writing to date.

2011 Posts with the Most Comments

April 22

Break Cancer: My Young Adult Cancer Experience*

March 11

Update: I Think I Know What Happened to the National Fibromyalgia Association!

October 25

The Girl Behind All That Lemonade

July 5

Question of the Week: Waking Up Worse Off?

March 5

Could It Be True? A Blood Test to Diagnose Fibromyalgia?

March 10

Mission 2011: I CAN Go to a Rock Concert

March 2

Wordless Wednesday: Do You Like My New Haircut?

September 6

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

May 7

I'm No Longer Celebrating Mother's Day

February 10

Social Media: A Source of Fibromyalgia Hate? #lovebeatshate

*this post holds the record for most comments on my blog with a whopping 108

2011 Posts with the Most Pageviews

April 22

Break Cancer: My Young Adult Cancer Experience

March 11

Update: I Think I Know What Happened to the National Fibromyalgia Association!

April 27

My "Bust an Infertility Myth" Blog Post

March 5

Could It Be True? A Blood Test to Diagnose Fibromyalgia?

September 7

Wordless Wednesday: My Carpal Tunnel Surgery Photolog

March 8

What Ever Happened to the National Fibromyalgia Association?

March 22

My Mayo Clinic Adventure - Day One

March 23

My Mayo Clinic Adventure - Autonomic Testing on Day 2

April 16

In Focus: Livestrong Young Adult Alliance

January 11 

Marriage + Chronic Illness = Guilty As Charged

2011 Posts Worth a Second Look

December 30

Did I Keep My 2011 New Year's Resolution?

November 23

Reflection on My First Thanksgiving After Cancer Treatment

October 11

An Easier Way to Take Your Medicine

September 13

One Way You Can Encourage a Chronically Ill Friend #iiwk2011

August 31

Almost Wordless Wednesday: Don't Worry

July 20

Wordless Wednesday: A Few of My Least Favorite Things

June 13

Question of the Week: Are You Paying or Playing?

May 10

Offering Support 101

April 20

Wordless Wednesday: Phonebook + Duct Tape = Solution

March 21

Question of the Week: Can You Say the "D" Word?

February 24

Mission 2011: I've Got a Form for That!

January 26

(Almost) Wordless Wednesday: Fly Anyway




Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Thursday, January 5, 2012

Me and Hep C:
Am I Getting Cold Feet?

Even when you know that you are making the right decision, you can still get cold feet while you are waiting for the consequences of said decision to kick in.

That's where I am at right this moment.

There are five days until my next doctor's visit with my hepatologist and I am freaking out because this is THE big visit where we talk turkey about starting Hepatitis C treatment with the triple cocktail of interferon, ribavirin and one of the new direct-acting antiviral medications.  At the end of this visit, I expect to be walking away with a game plan, a timetable and prescriptions in hand--pretty overwhelming stuff!

This is the turning point where I go from thinking about Hep C treatment to actually do it.

I keep telling myself this is a normal and expected reaction.  After all, everyone feels some ambivalence about their decisions, even if they are completely committed to them.  There is always that nagging "what if I'm making the wrong choice" factor that quite frankly won't get answered until after you take the plunge. 

I think my ambivalence comes from knowing that this is not going to be easy.  This is 24 to 26 weeks of chemotherapy administered by me in the comfort of my own home.  Treatment is a weekly injection of interferon and two different pills, ribavirin taken twice a day every 12 hours and an antiviral taken three times a day every 7 to 9 hours.  Oh, and the antiviral has to be taken with 20 gram of fat.  (I'm currently trying to wrap my head around how exactly I am going to do that.)

Most of all, this is a commitment to taking those pills on time, not missing one single dose or taking a dose late, because if I falter it opens a window of opportunity for that darn virus to mutate and become immune to the treatment.  Talk about pressure!

God, I hope I can do this because one thing I am NOT is perfect!

Then there are the side-effects.  It makes no sense to list all of them because who knows which ones I will get. There are two however that I am concerned about the most:
  1. Anemia and the adverse effect it will have on my dysautonomia symptoms.  When I attempted Hep C treatment back in 2007, it was a heart rate of 120 and shortness of breath brought on by anemia that landed me in the hospital and convinced me to stop treatment.  I think I might feel better if I could connect with a really good cardiologist in the next few weeks that could manage this side effect appropriately.
  2. Some people experience depression from interferon treatment.  (In fact, this is not specific to Hep C treatment alone--patients with MS on interferon are also at risk for this complication.)  The good news is that I will speak up if I start to feel depressed and get treatment.  The bad news is that it can take several weeks before antidepressant medications "kick in," so I might be a grumpy camper for a while.

I am also preparing myself for a lower level of functioning.  Currently, I would say I am about a 35/100.  When I crashed and burned from treatment in 2007 I found myself at a 10/100 and it took three months to get back to 25.  With support from my husband and the generous use of energy savers like prepared meals, online shopping and help from others I am confident I can scrape through if this indeed happens again.

Ack!

Finally, there are three other things that are bothering me:
  1. I won't be able to keep up with my blogging as much as I would like because of treatment side effects.  (I'm considering video blogging or podcasts as alternatives.)
  2. My container garden will suffer this year because I won't have the energy for it. (Which might mean my new blog, The Seated Gardener, is going from temporary to indefinite hiatus.) 
  3. I'm afraid I might lose the attention of readers like you who come here for posts on fibromyalgia, chronic pain and chronic illness in general if I write about Hep C too much.  (My need to be an advocate for people living with Hep C might override this concern.)
So yeah, I have cold feet.  (Apparently going through with treatment might give me cold feet too!)  But this will pass once I go to my doctor's appointment and start moving forward instead of sitting here waiting.  It's like they say (sing it along with me...) The waiting is the hardest part!



Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Wednesday, January 4, 2012

Wordless Wednesday:
Sharing My Good Fortunes






Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails

Tuesday, January 3, 2012

Wondering What the New Year Holds in Store for You?

Welcome to another Question of the Week.

A new year seems like a pretty good time to contemplate what is going to happen over the next 366 days (err, make that 363.)

Let's face it; we all want good things to happen to us.  I know for a fact that some good things will happen in 2012.  I also know some not-so-good things will happen too.  But I chose to focus on the good things because it's the good things in life that help me get through the not-so-pleasant stuff that shows up uninvited on my doorstep.  

But if you are thinking about the new year and saying to yourself, 'It's just going to be the same thing, day-in and day-out, like it was last year.' well, that's not going to fly with me.  If you don't think anything good will happen to you this year, I'm going to challenge you to think otherwise.

Yes, there are things we can control and things we cannot control.  And it sure seems like it's the unpleasant circumstances not within our control that grab hold of our attention and won't let go.  It is all too easy to get demoralized, depressed and worn down by the stuff we can't do a darn thing about.  I completely understand if this is where you are at, because I have been there too and it sucks.

Here is the thing.  If you spend your time trying to fix the things that are unfixable, you are going to be a very unhappy camper.  On the other hand, if you switch your focus onto the things you can control, you will start to feeling better about yourself and your life.  Nothing is more empowering than reclaiming your potential and doing everything you can do to better your situation in life in spite of your health problems. I promise!

To get you started, let's assume for a moment that the Mayan prophecy is true and the world is going to come to an end on December 21, 2012.  If you truly believed this, what would you want to do between now and then?  Hint, hint!  Maybe it's that something fun and life-affirming you've been holding off on because you have been waiting until your feel better...

Me?  I want to go on a vacation with my husband, somewhere pleasurable, where we can take a leave of absence from the daily grind and just enjoy ourselves and each other.  A couple of places come to mind as I think about this, but the one place I know we can both agreed upon is Las Vegas.

Now because I live with multiple chronic illnesses, going on vacation takes a lot of planning and preparation.  I start with a Special Event worksheet.  It helps me start thinking about all the extra things I need to do before, during and after any event that will ensure I can participate without causing a huge flare-up of my symptoms. It also gets me thinking about modifying how I do things given my health challenges.

Chronic illness does impose limits and restrictions on how I do things, but it can't stop me from doing the things I want to do.  It is a lot of work, but it is so worth it when I am able to do something fun AND really enjoy it despite my chronic illnesses.  Plus having something fun to look forward to really helps get me through the sucky stuff in my life.

So what about you?  What does the new year hold in store for you?  What can you take charge of in your life that will help you feel better about yourself and your life?  What is something fun and life-affirming that would bring you more laughter and joy in 2012?

I'd love to hear from you, even if you are struggling with this challenge.  Perhaps, together, we can engage in some problem-solving and come up with a plan of action that lets you do something you didn't think possible because of your chronic illness.  So please leave a comment here or over at the OMA&P! Facebook page.

If you are really stuck, feel free to contact me via email.  I'd love to take this conversation further if you are willing to be featured in a future post here at OMA&P!.


Creative Commons License

Like this post? Then please...


Submit it to your favorite social sites.




Share it with PrintFriendly alternatives.

Print Friendly and PDF
Related Posts with Thumbnails