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Thursday, June 30, 2011

Mission 2011: Flexibility

Great Flexibility !Image by khalid almasoud via Flickr
I'm not sure why, but in my mind the words "routine" and "flexibility" seem to be at odds.

I mean, if you have a routine and you are doing the same things on a daily, weekly or monthly basis, where exactly does flexibility fit into the picture? Wouldn't it make more sense to abandon a set routine if your life requires a high degree of flexibility?

After all, it's hard for me to get anything done consistently day to day when my energy level can vary greatly minute to minute, hour to hour, day to day.

What really brought this point home to me this week was my follow-up appointment Tuesday with my hepatologist.

When he asked me how I was doing, I mentioned that I was feeling more fatigued and having more problems managing my diabetes. I almost said, "I'll make you a bet it's because my Hepatitis C viral load has gone up again." Sure enough, when he shared with me the results of my blood work drawn a few weeks earlier, I've learned that my viral load had gone from 11 million to 24 million in a little over 12 months.

I was floored.

After I got over my shock, which took a few hours, I realize this was the explanation for why it has been so much more difficult for me to get things done over the past several months. It also explains why I have been more prone to fatigue flareups when I try to live outside my energy envelope. I then really connected with the fact that my experience of chronic illness is an ever changing state of being which requires a large amount of flexibility on my part to change and adapt to my highly variable health status.

It makes me wonder if focusing on a routine is really relevant for me.

After sitting with this thought for a few days, I recognize that limiting how much I organize my day using routine is perhaps the best approach. The routines I talked about last week, which involve my bed time and awakening time, do work and I will continue to focus on utilizing and refining them. They truly do help me get my day off to a good start and help me transition into sleep, an area that has been profoundly affected by my chronic illnesses.

But I need to have the flexibility to arrange the rest of my day based on my pain and fatigue levels. To put this into the frame of a routine, I guess I would say that, in general, I have on average two to four hours during the day in which I can engage in activities that require my energy, attention and physical abilities. The rest of my day needs to be spent reclined on the couch engaged in passive pursuits and resting.

As I read this back to myself, I see that I'm building my case for trying to treat my Hepatitis C infection once again. And I did talk to my doctor on Tuesday about the new antiviral drugs that were recently approved to treat Hepatitis C. At my appointment, we decided to put off the decision to start treatment until I see him again in January 2012. Hopefully, by that time, he will have gained more experience prescribing these new medications, which will allow him to make a better recommendation to me about which course of treatment might work better. This gives me six months to get my head into the right place to prepare to do battle again.

I want to end this post by acknowledging that many of you may be in the exact same position I am with the illnesses you live with on a daily basis. I remember asking the staff of the chronic pain and fibromyalgia rehab program I attended back in 2005 what the prognosis for fibromyalgia was. I had to push because the staff was a little reluctant to share that information with me. What I learned is that at any given time, one third of people with fibromyalgia are getting better, one third are staying the same and one third are getting worse. While I'm sure the staff wanted me to focus on doing everything I could to get better, my reality has been staying the same or getting worse.

Understanding and accepting the reality of how my illnesses work really puts things into perspective for me. It helps me not feel so bad when, despite all my self-care efforts, I can see no measurable improvement in my symptoms. After all, it's hard to obtain improvement when your illness is getting worse.

A lack of progress does not mean I should abandon my self-care practices. It just means that, at the moment, more rest, pacing and patience are needed.




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Wednesday, June 29, 2011

Wordless Wednesday: Want This One to Go With the 24 Million I Already Have




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Tuesday, June 28, 2011

OMA&P! Hosting Patients for a Moment (PFAM) on July 6th


It is my honor and pleasure to host the next edition of the Patients for a Moment blog carnival here at Oh My Aches and Pains on July 6th.

Patients for a Moment is a patient-centered blog carnival with the goal of creating a patient blogger community. But participation isn't just limited to those living with illness. Behind every chronically ill person stands a team of medical professionals, friends and caregivers--even health care advocates and policy makers--and all are encouraged to participate!

This Edition's Theme

Since our next carnival happens around the USA 4th of July holiday, I'm asking you to submit a post on the theme of independence.

Let's face it: chronic illness can definitely be a challenge to a person's autonomy and self-reliance. So I want to hear about how chronic illness has impacted your self-sufficiency and ability to do things for yourself. So...

  • As a person with disabilities, you might write about how chronic illness has decreased your independence and what steps you have taken to regain it.
  • As an advocate, you might write about your efforts on behalf of persons living with disabilities to help them maintain their independence.
  • As a medical professional, you might write about how you help your patients maintain their independence in the face of disabling medical problems.
How To Participate

Please send your submission by the end of the day on Sunday, July 3rd via email. You can find my email address by clicking Contact Selena here or at the top of my blog. In your email, please include: your name (as it should appear), your blog’s name, your post’s title and your post’s URL.

I truly look forward to reading all you submissions.




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Monday, June 27, 2011

Question of the Week: Got Pain Meds?

Escitalopram 10mg Tablets (Lexapro brand)Image via Wikipedia
I've been living with chronic pain from chronic myofascial pain syndrome, osteoarthritis in my neck and low back, fibromyalgia, carpal tunnel syndrome and thoracic outlet syndrome for the past seven year.

Early this month, I was given my first prescription for a narcotic pain medication to help me manage the moderately severe pain, on average 7 out of 10, that I deal with on a daily basis.

I'm not exactly sure why it took so long for any of my doctors to decide to give this type of pain treatment a try. I have tried a lot of other medication for pain and have not gotten any significant relief. In fact, it has been at least a year since I have been offered the opportunity to try anything new. The list of what I have tried is very comprehensive and includes: antidepressant medications like Cymbalta and Lexapro, anti-seizure medications like Neurontin and Lyrica, non-steroidal anti-inflammatory medications like Mobic and Motrin and novel drugs like Tramadol and Nabilone.

I do know that since I have sleep apnea, my doctor was initially concerned about a narcotic pain medication suppressing my ability to breathe. A conversation with my sleep specialist cleared up this concern, since I am a faithful CPAP user and my sleep apnea is being adequately treated.

I also am aware that there is a marker reluctance in the medical community to use narcotic medications in general and in the specific case of fibromyalgia. It is my understanding that doctors are concerned their patients might become addicted to their pain medications. After doing some research of my own, I have found many credible sources that state the risk of a pain patient becoming addicted to narcotic pain medications is actually quite small. You can read more at Health.com and WebMD on this subject.

My doctor has asked me to sign a contract with her and submit to random drug testing before she prescribed this new medication for me. I have no problem complying with this conditions. In fact, I have made the decision to take a narcotic pain medication with great care and forethought, as I do with all the medications I take. I have great concerns about medication side-effects and adverse effects. I am willing to do what it takes to safeguard my well-being, include discontinuing any medication that is not benefiting me.

Now that I have reached this new treatment milestone, I am wonder what your thoughts are on this subject.

Do you take pain medications? Have you been prescribed a narcotic pain reliever? Do you wish that your doctor would prescribe one for you? Do you feel comfortable talking to your doctor about this treatment option?


I'm looking forward to reading your responses, which you can leave here or on the Oh My Aches and Pains! Facebook page.

PS While you are here, you might like to enter my Blooming Beauty contest for a chance to win a limited edition Mary Kay Lashes Love It! bundle.







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Friday, June 24, 2011

He's My Best Friend

Brunswick's loving look

People let me tell you 'bout my best friend,
He's a warm-hearted doggie who'll love me till the end.
People let me tell you 'bout my best friend,
He's a pup boy cuddly toy, my up, my down, my pride and joy.

People let me tell you 'bout him he's so much fun
Whether we're relaxing on the couch or whether we're at the dog run.
Cause he's my best friend.
Yes he's my best friend.
I know they say that dogs are "man's best friend," but I never really knew what that meant until I adopted my toy poodle Brunswick in January of 2008. Over the last 3 1/2 years, I have been amazed by the comfort, companionship and love that this shelter dog has brought into my life. He has transformed my experience of being mostly homebound from lonely to cheerful.

I have always been a cat person and continue to enjoy the cats that share my home with me. My cats were the perfect pets to have in my days before chronic, disabling illness. They didn't mind being home alone while I worked during the day and socialized in the evening. In some respects, I think they might have been a little put off when I started spending almost all my time at home; I think they missed having the house all to themselves.

On the other hand, Brunswick has always been thrilled to have me spend so much time with him. He wants to be right next to me the entire time that I'm awake. He patiently waits for me to shower him with attention and challenge him with training and doggie games. His presence fills my needs for companionship and social interaction while my hubby and friends are busy with work, school and other pursuits.

During our first year together, Brunswick actually experienced bouts of separation anxiety whenever I needed to leave the house. Fortunately he met a puppy at doggie day care that he got along with and wanted to adopt. Having his own doggie companion has helped a lot and now I have two eager buddies to share my day.

Along the way I have learned that it comes to being a best friend, my dog Brunswick beats all of my human friends, paws down. Here are some of the many reasons why:

  • He always wants to be by my side
  • He can roll with my crazy schedule
  • He is completely devoted to me
  • He seems to love me even more when I'm having a bad day
  • He is always excited to see me
  • He is always up for a nap
  • He is happy to follow me wherever I go
  • He accepts me for who I am, chronic illness and all
  • He doesn't get upset when I have to cancel our plans to go to the dog park
  • He eagerly complies with my requests
Now caring for dogs can be a lot of work and it definitely took me some time to adjust to the demands having a dog (or two) put on my limited energy. But I find that what I get in return is worth any extra pain or fatigue I might experience taking care of them. I love being a dog parent so much I can't imagine my life without a dog in it!

If you live with chronic illness, are homebound and in need of a best friend to keep you company, I suggest you consider adopting a shelter dog too.


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Thursday, June 23, 2011

Mission 2011: A Simple Routine

Bedroom in Camilo Castelo Branco House, Famali...Image via Wikipedia
I've given it some thought and I've come to an understanding about my aversion to the word routine. In my mind, having a routine and getting things done are two concepts that are intertwined. Unfortunately for me, getting things done, whether on a daily, weekly or monthly basis, is a sketchy proposition at best. If you live with chronic illness like I do, you know what I mean.

My Biggest Challenge

I've been disabled by chronic illness for almost 7 years now and the thing I find the hardest to accept is the profound way my disability prevents me from doing.

I mean sure, I would expect my disability to interfere with getting big things done that require a lot of energy and time, like yardwork or spring cleaning, a day full of shopping or cooking. What I did not expect were all of the hundreds of little ways my disability interferes with me accomplishing the small things. I often feel frustrated at my inability to be productive. I have learned to recognize this as old expectations for my previously healthy body and consciously dismiss these expectations as unreasonable for my current state of being,

While trying to be kind to myself, I do acknowledge that I completely and utterly fall short in my ability to do compared to healthy people. I sometimes wonder how healthy people judge me, especially those without knowledge of my chronic illnesses and disability. Although maybe that judgment is coming from that small bit of myself that desperately wants to be healthy and normal once again.

A Plan for Success

Using this new insight, I've decided I need a simple routine, a routine that focuses on the basic essentials I need to accomplish each day. At this point in my life, it needs to be doable as well as specific and focused. My simple routine needs to set me up for success, so I can feel good about accomplishing what I can, gracefully accept what I cannot and have clarity about what tasks and projects belong in each category.

With this new frame of reference, it was easy to see that my routine needs to focus on two times a day: when I wake up and when I go to bed.

When I Wake Up

There are a cluster of items I need to focus on after I get out of bed that will help get my day started in the right direction. While this may look a little bit different each and every day, the basic tasks remain the same: get up, get dressed, let the dogs out, eat breakfast and then rest. This also happens to coincide with a time of day when I need to take my medications.

After mulling over several different ideas about how to make sure taking my diabetes medication is part of this wakeup routine, I've settled on combining it with testing my morning blood sugar, which is something I need to do every morning as well. That way, if I can't remember whether I took my medication or not, I can simply look at my glucometer to see if there is a blood glucose reading for the morning. I'm hoping that focusing on these two tasks together will ensure they both get done daily.

When I Go to Bed

This is the second cluster of items I need to focus on daily. This includes taking several medications before bedtime, as well as cleaning my CPAP machine before its nightly use. This is also the time designated for showering, since doing this in the morning wipes me out for the entire day.

I'm adding a regular "brain dump" here so I can let go of the things rattling around in my brain before I go to sleep. This will also lend itself to reviewing the upcoming day so I can get prepared mentally and physically for any appointments or special events that might be happening. Another integral part of this time of day is winding down and enjoy activities that are quiet, peaceful and sleep promoting.

The Time In Between

As for the rest of the day, I'll live by one guiding principle. I will check in with myself, assess my energy level and choose my activities accordingly. My brain dumps will be used for ideas about the things I'd like to focus my attention on and I will see if those things fit with my energy level each day. And I promise to go easy on myself if I'm low on energy and unable to accomplish much that day, as well as exercise caution on the days when I have more energy to make sure I don't over do it and wind up flaring myself up.

Over the next seven days I'll be paying closer attention to how this simple routine works in action and I'll report my findings back to you in my next Mission 2011 post.


Hey there--don't forget to check out my Blooming Beauty Contest. There are six easy ways to enter into a drawing for a limited edition Mary Kay Lashes Love It! bundle that includes 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 until Tuesday, July 5th at 11:59 Pacific Daylight Time to enter.







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Wednesday, June 22, 2011

Blooming Beauty: A Wordless Wednesday Contest

lemon blossom
I'm feeling inspired by the beauty that is blooming in my garden, so much so that I headed out yesterday and took some pictures of the vegetables, shrubs and trees that are in flower right now.

Being surrounded by beauty also made me think about how beautiful we all are too. Since Mary Kay® is part of my beauty routine, I decide to share my love of all things beautiful with you.

How to Play:


Step One: Guess which plants produce the blooms below. (You can go here for a hint, just scroll to the bottom of the page.)


Image One

image one

Image Two

image two

Image Three

image three

Image Four

image four

Image Five

image five

Image Six

image six
Step Two: Leave your answers here as a comment or head over to the Oh My Aches and Pains! Facebook page, find the Blooming Beauty discussion and leave your answer there.

Step Three:
Get up to five additional and/or alternate entries when you:
  1. Sign Up to Receive My Blog Posts By Email through Feedburner
  2. Like Me on Facebook
  3. Follow Me on Twitter
  4. Follow My Blog on Networked Blogs
  5. Follow Me on Google Friend Connect
It's All About the Prizes:

For each step you complete and corresponding comment you leave, you will be entered into a drawing for 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.

I will also select five runners-up who will receive a coupon for $10 0ff your purchase of $40 or more and free shipping from me, your friendly Independent Mary Kay Consultant.

Contest Rules:

I will be accepting entries until Tuesday, July 5th at 11:59 Pacific Daylight Time.

You are eligible for the prize drawing if you reside in or have a USA mailing address. If you sell Mary Kay or are affiliated with the company in any way you are not eligible to receive a prize.

The winners will be announced here on my blog and on the OMA&P! Facebook page on Tuesday, July 12. Winners will have 5 days to claim their prizes by contacting me. After five days, the prize will be offered to another contestant.

Have fun and good luck!


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Tuesday, June 21, 2011

Confessions of a Stay at Home Wife

Jacek Mierzejewski: Portrait of his housewifeImage via Wikipedia
I never planned to be a stay at home wife. My plans for my future always included a career and working. So when I became disable by my multiple chronic illnesses, I entered new and unfamiliar territory: the land of the housewife.

Making this situation worse was the absence of meaningful pursuits to make staying at home purposeful and rewarding. We had failed in our family building pursuits to date and any further plans got put on hold when I became disabled. I didn't have the energy or know-how to start a blooming work-at-home business and problems with my hands made creating a handmade Etsy empire not feasible.

Quite frankly, there were, and continue to be, days when getting out of bed is the biggest accomplishment of my day.

I also didn't anticipate the huge impact staying at home would have on my relationship with my husband. This impact was most apparent at one particular time of day: the hour when my husband came home from work.

Over the past seven years, I have learned from experience and trial and error what NOT to do when my hubby gets home.

You see, I am at my best at the time of day my hubby gets home. This is my "get it done" time. I am raring to go and anxiously waiting for him to walk in the door and help me with the tasks that require his assistance.

This is a stark contrast to where he is. In all fairness to him, when he walks in the door he is tired, hungry and sometimes really stressed out. Which means these states of being need to be gently addressed and allowed to dissiapate before he can plug into life at home.

Here is what I have learned from experience:


TOP TEN THINGS TO AVOID DOING
WHEN HUBBY GETS HOME FROM WORK


  1. asking him to do something the minute he comes in the door
  2. subjecting him to my bad mood
  3. engaging him in solving problems
  4. listing all the things I need him to do before bedtime
  5. making him jump back into the car right away to run an errand
  6. telling him the cat barfed or the dog peed and then asking him to clean it up
  7. sharing any bad news received via email, phone or mail during the day, especially when I am still majorly upset about the news myself
  8. complaining when he comes home late
  9. carelessly making any comment that gives the impression that I don't value his work and its contribution to our household
  10. failing to greet him kindly when he walks in the door

Relationships are hard work, even under the best of circumstances. I find that if I follow these guideline diligently, my relationship with my hubby and his transition from work to home become much more pleasant experiences for both of us.



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Monday, June 20, 2011

Question of the Week: How Do You Contact Your Doctor Between Office Visits?

The Doctor, by Sir Luke Fildes (1891)Image via Wikipedia
Sunday night I needed to contact my doctor because I starting having the symptoms of that bane of female existence, the urinary tract infection (UTI.)

Which got me think about all of my doctors and the different procedures I've needed to learn in order to contact them between office visits...

Don't Bug Me

Um, yeah, can you believe it? Over the years I have actually been seen by some doctors who insist you come into the office to see them and won't have contact with you any other way. I've discovered this the hard way, when I called their office asking to leave a message, only to be told by the staff that I need to schedule an appointment to ask my question.

In my experience, these doctors have generally been specialists that embrace this philosophy: "Your primary care doctor should implement my recommendations to the letter, so there should be no reason for you to bother me after hours or between appointments."

None of these doctors have remained on my healthcare team for very long.

Talk To My Assistant

Then there are doctors who put their staff between them and you. Or they have staff that feel they must protect their boss, so they create a buffer zone around them. Either way, you have to deal with the receptionist, medical assistant or nurse practitioner if you need anything.

I guess this works if the doctor's staff is top-notch, diligent and organized. Unfortunately this isn't always the case. Let's face it, some of the people working in doctors' offices really have no business being there. I've had these situations go horribly sideways when I have needed to be persistent, even pushy, with staff members to get what I need.

It's definitely a hassle, but if the doctor is really good, I have been known to put up with some mistreatment by their staff just to keep the doctor on my team.

Call Me

It is rare to actually be given a doctor's direct telephone number where you can leave a voice message that is going to be listened to by them. And yet somehow I have lucked out big time with a gynecologist who does just that. She almost always returns my called within 24 hours. Sometimes she actually answers the phone when I call! Plus she is always pleasant and never sounds annoyed or upset when she returns my calls.

This one is a keeper.

Page Me

I really try not to page a doctor: really , honestly and truthfully. But I am a sick chick and sometimes I really need to get a hold of the doctor, stat. In the past, this has been a real mixed bag when it comes to the results. For a while there, I would only get a call back if I paged and then jumped into the shower--don't ask me why!

I have to say that I work super-duper hard not to be in this situation and try to take whatever response I get, even the absence of a call back, in stride. Which means I need to accept that I might have to use Plan B, like going to the Emergency Room or Urgent Care, if a page to the doctor doesn't circumvent it.

Send Me An Email

I think my favorite way to talk to my doctor between office visits is email.

But this is definitely different than sending an email to a friend or family member. An email to a doctor has to be specifically tailored to them. That means crafting a message that is short, sweet and to the point. It also means putting my full name in the subject line and my medical record number in my signature.

Then, when I hit send, I have to stick around and make sure I don't get a dreaded "out of office" reply. Because if I do, I need to move on to Plan B (see above.)

I'm happy to report that this time, I used email to contact my primary care doctor and I got a quick and helpful response. What helped too was going to the pharmacy and getting a home UTI detection kit and sharing those results with my doctor via email. She used the number I gave her in my email for my pharmacy and called in a prescription within two hours.

Now that is an amazing response time.

So how do you prefer to contact your doctor between office visits? What contact options have your doctors given you? How well does this work for you?

I look forward to reading and responding to your comments here or over at the OMA&P! Facebook Page.


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Thursday, June 16, 2011

Mission 2011: Getting Back On Schedule

Gentaur scheduleImage via Wikipedia
Welcome to a new month of Mission 2011 posts.

This month I want to focus on the related topics of schedules and routines, mostly because my recent increase in life stressors has almost completely and totally thrown off my own habits. Since things have finally started to calm down, it's time to get back in my groove.

When I initially set out my plans for my year-long series of posts for Mission 2011, I set this goal:


Making and sticking to a schedule of rest breaks throughout the day.

Now that is still a great goal, but I have recently realized I need to work on so much more than rest breaks when I comes to my schedule.

For example. the other day I could not remember if I had taken my once-a-day diabetes medication. You would think that since it is an injectable, I would remember poking myself. I literally stood in front of my diabetes supplies for several minutes racking my brain for recall. In the end, I decided against a possible second injection for fear that I might take too much medication and have to deal with the consequences.

Not a good way to start my day.

Back in 2009 I wrote a whole month-long series of post about developing a daily routine. One of the earlier posts in that series was Can Routine Help Me Manage My Fibromyalgia? Two years later and it seems I am in need of a refresher course on this topic.

The good news for both you and me is that can take that refresher course together by clicking this link: routine.

In the meantime, I did one thing this week which I hope will get me back on track. I call it a brain dump. I recognized I was getting bogged down by a bunch of things rolling around in my brain. So I took the time, a few minutes each day, to write down all the things floating around in there.

I've found that a To Do list and/or scheduling tasks with due date makes me feel pressured, overwhelmed and unproductive. So this brain dump was more about creating a prompt I can reference to help get me focused when I have the energy to accomplish something.

When using this prompt, I emphasizing flexibility and breaking things down into smaller steps, which works so much better with my fluctuating pain and fatigue levels. Sure, there are things in my life that have specific due dates, but I've learned that the majority of things aren't so time and date dependent after all.

I have to say that getting those things out of my head has really helped me get clearer and more focused. I am also being diligent about adding to the list whenever I hear myself talking about other things that need my attention. Yes, the list is long, so I hide it away when I am feeling tired, overwhelmed and not up to taking on tasks.

One thing I have come to accept is that not all the things on that list are going to get done...and that is just going to have to be OK.

I'll be back next week to write more about this subject. At the very least, by the end of June, I will schedule those regular rest breaks during each day and figure out a daily routine that ensures I take my diabetes medication every day without fail.




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Wednesday, June 15, 2011

Wordless Wednesday: Easter Bunny?

Easter Bunny?


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Tuesday, June 14, 2011

What Is Working and What Is Not


Today I wanted to talk about some emerging challenges with my self-care routine and the steps I am taking to address these new issues.

Sleep Apnea

What's not working: I have been using a nasal pillow mask for several years now. During that time, I've been dealing with a lot of nasal discomfort, with the most troublesome symptom being increased nasal stuffiness. My primary care doctor recommended I use a prescription nasal steroid spray to combat this problem. Unfortunately, my endocrinologist thinks the nasal steroid is mimicking the symptoms of a hormonal problem and has asked me to stop using spray.

What is working
: I decided it was time to go back to the drawing board and check out different CPAP mask configurations to see if switching to a different type of mask could solve the problems I was having a nasal stuffiness. After doing some research I decided to give the Sleepweaver soft fabric nasal CPAP mask a try. The new mask allows the air from my CPAP machine to surround my nose rather than be blown up inside of it. This seems to be making a difference, as the problems I've been having with nasal stuffiness seem to be resolving.

The bottom line: If you are a CPAP user like me, it pays to keep on top of new developments in CPAP technology. Every year, I find new and innovative products that are helping me minimize or eliminate many of the small annoyances that come with being a regular CPAP user.

Dysautonomia

What's not working: I've been trying to implement the recommendation from my doctor at the Mayo Clinic to include more electrolyte beverages into my daily routine. Electrolytes help me better maintain my fluid balance, which is a problem when you live with postural orthostatic tachycardia syndrome (POTS) like me. Unfortunately, most electrolyte drinks contain sugar. Since I'm diabetic, I generally avoid sugary drinks because they present a signification challenge to my blood sugar management.

What is working: I've been searching for several months now, looking for an electrolyte drink that is sugar-free. I recently discovered Ultima Replenisher, a balanced electrolyte drink that is sugar-free and recommended by the Dana-Farber Cancer Institute for their patients. I purchased the lemonade flavor a few weeks ago and really liked the taste. I'll be ordering the orange flavor from Amazon.com in the next week to give that a try.

The bottom line: What can I say? Persistence often pays off.

Type 2 Diabetes

What's not working: Unfortunately for me, my blood sugar levels appear to be on the rise once again. I can honestly say I have not made any significant changes to my diabetes self-care routine, so my best guess is that the rise in my blood sugar has something to do with my Hepatitis C viral load. I've noticed in the past that when my viral load increases I have more difficulty controlling my diabetes.

I just had blood drawn a week ago. I will be getting those test results soon and I anticipate that they will confirm my suspicion.

What is working: In the meantime, I've needed to get more diligent with my diabetes self-care. I am double checking to make sure that my meals are balanced between carbohydrates, protein and fat. I am also making sure I include more high fiber carbohydrate choices, like whole grain bread and pasta, beans, whole fruit and starchy vegetables, and fewer simple carbohydrates choices, like products made with refined white flour and sugar.

I've also discussed my concerns with my endocrinologist and she has suggested increasing my dosage of Victoza.

The bottom line: This isn't the first time this has happened. And each time it happens, it gets me thinking that it might be time to start thinking about treating my Hepatitis C. So when I see my hepatologist for a follow-up appointment at the end of June I'll be talking with him about hepatitis C treatments once again.

As you can see from this discussion, managing my chronic illnesses is an ongoing process with an ever-changing target that requires me to be resourceful, flexible, persistent and engaged. It's a lot of work, but it's a very necessary part of my life. After all, no one is in a better position to take care of me than I am. Too bad it's not a job that doesn't pay better.

The bottom line is I know I'm doing a good job when I continue to be able to live my best life despite all my health challenges.




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Monday, June 13, 2011

Question of the Week: Are You Paying or Playing?


I admit that I was down for the count this weekend due to a major flare-up of my chronic neck, shoulder, arm and hand pain. Which gave me plenty of time to contemplate The Golden Rule of Chronic Illness:


If I push, I will pay. If I pace, I can play.

What can I say? I know the rule, I chose to ignore it and I paid the price. I was bound and determined to get a whole bunch of things done, so I took a big chance testing my limits and hoping I could pull off living on the edge of my energy envelope.

Yeah, that didn't work out very well.

Using my hands too much has gotten me in trouble, again. I know there are limits to how much I can do with my hands before a whole downward spiral of increased pain develops. It's unclear if this sensitivity is due to carpal tunnel syndrome, fibromyalgia, thoracic outlet syndrome or a combination of all three.

This past weekend I really got in touch with how frustrating my hand pain can be. One of the things I love to do is arts and crafts and the problems I have with my hands severely limit how much and how often I can pursue this pastime. My hands also interfere with my ability to write in a journal, cook or use the computer, among other things. As far as the computer is concerned, I try to compensate by using a speech-to-text program with mixed results.

After two days of aggressive rest, my hands and everything connected to them are on the mend. Two days of doing nothing also gave me lots of time to think and I've decided to move forward and schedule a consultation with an orthopedic hand surgeon recommended to me by my neurologist. I think it's time to seriously consider having carpal tunnel surgery despite my concerns and fears.

In light of the fact that I've been paying recently, I'm wondering if you are paying too. Have you been ignoring The Golden Rule of Chronic Illness?

For that matter, have you ever heard of The Golden Rule of Chronic Illness before? In case you were wondering, it's actually something I've put together myself. Its inspiration was the many online conversations I had with fellow chronic pain and fibromyalgia sufferers who time and again extolled the power of pacing and identified pushing as a major source of flare-ups. I find it to be a simple way to remind myself of the most essential self-help tool I can use to manage my fibromyalgia and chronic pain symptoms: pacing.

As always, I invite you to leave your answer to the Question of the Week here or over on the Oh My Aches and Pains! Facebook page. While you're at it, can you also leave me some feedback about my new blog header? I'm investing some time and money into a blog makeover and would love to know what you think.

Have a great week and I hope it's full of play!


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Friday, June 10, 2011

I've Got Spring Fever

Garden SunshineImage by Property#1 via Flickr
So I am feeling a bit like a slacker, dear readers.

When it comes time to write my blog posts lately, I find myself instead being lured into curling up under a blanket on the sofa and watching an episode of Farscape (my latest guilty pleasure courtesy of Netflix streaming on my TiVo.) Seems I've been extra low on energy in the evenings, with only enough to watch an episode or two of TV before I head to bed.

I have been trying to figure out what in the world is going on with me, then it hit me: I have Spring fever.

No, I'm not actually physically sick; more allergies lately, yes, but not sick. The Spring fever I have consists of being lured outside into my garden during the day by Mother Nature. Like all of the plants and animals around me, I am responding to the call to start moving, blooming and growing.

Enticed by the warmer weather and the sunlight lasting longer into the evening hours, I want to go outside to my "girl grotto" this time of year.

Plus this is the season when I start working in earnest on my container vegetable garden. And with all the distraction over the last few months getting me off to a late start, find myself staying outside longer so I can play catch up in get things planted as soon as possible. Which means I've been pushing the boundaries of my energy envelope, skirting the line between pacing and pushing.

No wonder I am so pooped by the time night falls and I'm back inside contemplating my next blog post.

I've begun to see Spring for what it truly is for me: the beginning of my over-activity season. I'm falling prey to that voice in my brain that says, ' Get out of the house and do more.' Too bad this sick and tired body of mine can't keep up with my mind's desires!

Too bad I'm not a plant. After all, sunshine and warm weather make plants grow and flourish. Too bad spending more time outdoors and planting myself on terra firma does help me build my energy reserves and assist me in accomplish more things during the growing season.

I know for a fact there is no sunshine cure for chronic illness.

Ultimately this means confronting, once again, my reality--there is only so much energy I have each day. If I push beyond my limits, I will pay. Oh the disappointment that results when I compare what I want to do with what I can do.

It is ironic that before, my problem was "so much to do, so little time." Now my problem is "so much time on my hands, so little energy to get anything done." All I can do is laugh at how absurd life can be sometimes and hope that one day these two variables, energy and time, find a way to balance themselves out.

So I've come to the conclusion that I need to re-double my pacing efforts, so I have more energy available to me to keep doing the things I love, like blogging, and spend less time crashed on the couch because I have overdone it. I've got to rein in my Spring-inspired enthusiasm before I find myself all flared up and unable to do anything.

But before I get back to reality, I'm going to honor Spring by taking a moment to imagine just how much I could get done if it was only a matter of shear will, motivation and zeal.

I think that no matter
how old or infirm I may become,
I will always plant a large garden
in the spring.
For who can resist the feelings
of hope and joy that one gets
from participating in nature's rebirth?

~Edward Giobbi



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Wednesday, June 8, 2011

Wordless Wednesday: Love Your Body

The Body Shop Barbie


The Body Shop - love your body


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Monday, June 6, 2011

Question of the Week: Did You Subscribe to Fibromyalgia Aware Magazine?


It seems that several of my friends who are living with fibromyalgia are still upset with the National Fibromyalgia Association (NFA). They paid for a subscription to the Fibromyalgia Aware magazine and haven't received a copy since about Summer 2010.

About Fibromyalgia Aware Magazine

I'm familiar with this magazine, having read it a few times in my doctor's office. It was priced at $34.95 a year for a paper version and $19.95 a year for the online version and came about 3 or 4 times a year. It was an expense I had to forgo in favor of paying my medical bills and buying food. Which was OK, since I always seemed to manage to pick up a free copy at my rheumatologist's office.

Subscriber Feedback

Back in March, my friend the Fibrochondriac wrote on her blog about her disappointment about not getting her issues of Fibromyalgia Aware. After almost a year of wondering, she learned the fate of the magazine in March 2011 through NFA Founder Lynne Matallana's YouTube video about the problems facing the NFA. She wrote:
Ah, so that’s why I haven’t received a copy since Spring 2010 even though my subscription are paid through 2012.
Then I was shocked when I read this comment in May over at my friend Felicia Fibro's blog:

Had I received any emails I would not be addressing this issue. In January I sent in a subscription for the AWARE Magazine…my check was cashed in March 2011, and I haven’t received a copy of the magazine or any explanation as to where my money went. Could someone please update me as to what is going on. Thank you.
Wow, what can I say? My heart goes out to this reader.

What Now?

So apparently the Fibromyalgia Aware magazine stopped publication sometime during the Summer of 2010. That leaves me wondering if there are subscriber out there who are due a refund for the issues that they didn't receive. There has been no official word from the NFA on the subject of magazine subscription refunds.

The contact information for the NFA on their website is out-of-date; there is no way to call or write and get some answers using the information provided there. Apparently this contact information has been out-of-date since January 2011.

I have learned from another friend that she has repeatedly tried to contact them via email for answers and received no response to date.

I recently saw a new contact address for the NFA in a donation solicitation email for All Wheel 4 Fibromyalgia:

National Fibromyalgia Association
1000 Bristol Street N #17-247

Newport Beach, CA 92660-8916

A quick MapQuest search reveals that this is the address of a business called the Mail Room, a private mail box company.

My 2 Cents

Here is the thing. I once had a magazine subscription that didn't work out as planned. I can't remember the name of the magazine, but unfortunately it went under. I got a very nice letter from them saying that the rest of my subscription was going to be substituted with another magazine. I didn't feel cheat or upset because I found out about this magazine failing directly from the company and they offered a reasonable alternative. Because of their actions, I didn't feel like I needed to ask for a refund.

So why couldn't the NFA they have done something similar? At the very least, how about a postcard saying something like, "Were sorry but Fibromyalgia Aware is no longer in publication." and then some kind of gesture to make up for the inconvenience. But perhaps it's just too late for this now...

I am writing this post today because I care and I want to know:

  • Have you been affected by the demise of the Fibromyalgia Aware magazine?
  • What are your thoughts and feelings about how this whole situation was handled by the NFA?
  • In addition, what steps you have taken to get your voice heard by the NFA about this subject?
  • Most of all, what action and resolution from the NFA would you like to see?
Feel free to leave a comment here or head over the the OMAP! Facebook page and join the discussion there.



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Friday, June 3, 2011

Words of Wisdom

Personification of wisdom (in Greek, "Σοφ...Image via Wikipedia
I was inspired to put together these three pieces by a friend who does this very thing on a daily basis. I know she does it to inspire other people, so I in turn am doing the same to inspire you. Now I think these are some pretty good examples of pearls of wisdom and I've paired these gems with a picture of Sophia, the Greek embodiment of wisdom.

The Unrecoverables

There are four things in life that you cannot recover:

  • A stone after it has been thrown.
  • A word after it has been spoken
  • An opportunity after it has been missed.
  • Time after it has passed.

Ten Truths to Live By

1. Trust your gut. If it doesn’t feel right, it probably isn’t…

2. Keep your hands clean. Take this both literally and figuratively and it will save you from a lot of regrets later.

3. Don't let your possessions own you. After all, they are just things.

4. Remember your manners. Being polite doesn’t cost a thing, but it speaks volumes about who you are.

5. Treat others the way you want to be treated. Remember that we all need somebody. None of us achieves anything without the help from others.

6. Cherish your relationships. The investments you make in other people will pay huge dividends all your life.

7. Keep the little kid inside you alive. Play fuels your imagination and creative energies.

8. Be grateful. Gratitude helps you to grow and expand; it brings joy and laughter into your life and into the lives of all those around you

9. Believe in yourself. Once you realize how valuable you are and how much you have going for you, you'll see that you are only person in the world who can truly hold yourself back in life.

10. Always remember that someone loves you. After all, it's love that makes the world go 'round.


What I Have Learned:


  • A smile is an inexpensive way to improve your looks.
  • Being kind is more important than being right.
  • If I don't have the strength to help someone, I can always pray for them.
  • A grouch is someone waiting to be loved and appreciated.
  • Sometimes all a person needs is a hand to hold and a heart to understand.
  • Everyone you meet deserves to be greeted with a smile.
  • It's the small things that make life so wonderful.
  • Love heals all wounds.
  • Don't be so focused on the destination that you forget to appreciate the journey.
  • When you harbor bitterness, happiness will dock elsewhere.
  • I will keep my words both soft and tender in case I need to eat them tomorrow.
  • Life is tough, but I'm tougher.
  • I can't choose how I feel, but I can choose what I do about it.
  • We should be glad the Universe doesn't always give us everything we ask for.
  • The most beautiful people in the world are those who have found their way through defeat, suffering, struggle and loss.


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Wednesday, June 1, 2011

Wordless Wednesday: Up





Video taken in my backyard.



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