eader

Monday, February 28, 2011

Question of the Week: Has Your Doctor Given Up on You?

A doctor examines a female patient.Image via Wikipedia
Last Friday I found an interesting article over at the Fibromyalgia Network website called Patient Rights & Second Medical Opinions. So I posted it on the Oh My Aches and Pains! Facebook page. Since the article talks about coping with a less than helpful doctor, I asked the question, "A doctor giving up on a patient? Well yes, this has happen to me. Has it happened to you too???"

When I got a heart-wrenching response, I knew I needed to ask this question here on my blog too.

Now I initially wanted to write about a doctor that gave up on me while I was struggling to get my mysterious chronic pain and fatigue worked up and diagnosed. But I decided I didn't want to go back and relive all the drama he caused in my life. Instead, I just wanted you to know that it has happened to me, more than once, and I coped by firing the doctor and searching for a better one.

I won't deny that finding a new doctor can be a pain in the butt. I also acknowledge that as the patient, I have taken the brunt of the negative fallout in these stressful doctor-patient interactions. I've come to accept that finding a new doctor is all too often a necessary step in getting good, quality health care when you live with chronic illnesses. I've also decided that I need to take advantage of grievance programs through medical institutions and medical licensing boards to deal with some of the unfair treatment I receive.

That said, what I really want to write about is how the true problem lies with the role assigned to and our expectations of doctors in our society. Consider that after our parents and teachers, theirs is some of the most respected and heeded advice we receive. We're taught to view them as the experts in all things medical and health care. After all, they take an oath to, among other things, apply all measures necessary to treat a patient, prevent disease and do no harm.

The bottom line: we put doctors on a pedestal. Which is fine, I guess, until something knocks them down...

Despite the plethora of ethics in the Hippocratic Oath, for all practical purposes there seems to be a loophole, because the beginning of the oath goes like this: "I swear to fulfill, to the best of my ability and judgment..." (For a real eye-opener, follow the link above and read the entire oath for yourself. The compare the ideals espoused by the oath to what really happens to you when you see your doctor.)

I've surmised that figuring out exactly what "the best of (their) ability and judgment" looks like is the job of every patient. Which means instead of blindly relying on their presumed medical expertise, we need to be keeping track and making notes each time we see our doctors. We need to decide if a doctor meets our needs and is practicing good judgment. Sure, we may not be medical experts ourselves, but that shouldn't stop us from saying no to medical care that is arrogant, disinterested, dismissive or unsympathetic.

Most of all, we need to learn how to not take it personally when our doctors' fail us. Clearly there is going to be some variation in what the "best ability and judgment" looks like across the entire medical profession. Not every doctor is going to be a good fit for what we need, both in medical practice and bedside manner. We need to be active in our medical care when it comes to exercising our choice of medical providers whenever we are allowed to do so.

So maybe what I am really asking you to share with me this week is: How did you overcome situations in which your doctor gave up on you? Leave a comment here or on the OMA&P! Facebook page with your thoughts, suggestions and encouraging stories.

Creative Commons License
Enhanced by Zemanta


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, February 25, 2011

10 New Words to Describe My Fatigue

Exhausted dancerImage via Wikipedia
Did you know that the Eskimos have 100 words for snow? Seems if you live with snow day in, day out, for your entire life, just one word isn't enough to describe the nuances, variations and subtleties in each and every snowfall.

Well I live with severe fatigue every day and I am beginning to see that the words "tired," "exhausted," and "fatigued" just aren't enough either. So I went looking for some new words to describe my constant companion and I think you'll get a chuckle from the results.

baked - a kind of tired similar to being drugged

-> I am so totally baked I can hardly move.

bedraggled - so exhausted you look like hell

-> After a night of no sleep, I am bedraggled.

cashed - so drained you are running on empty

-> Man I am completely cashed.

crunchy - feeling so sick and ill that it makes you dog-tired too

-> I am so flared up right now I feel crunchy.

deaded - so out of energy that death will be your next stop

-> I'm so deaded, I can't get out of bed today.

hit - so weary you feel like you've been beat up in a fight

-> I'm hit and headed for a nap of epic proportions.

inquant - fatigued to the point of ludicrous hysteria

-> I am so inquant after no sleep that all I can do is laugh.

knackered - extremely tired (comes from a term used to describe animals too old, sick or worn to be eaten)

-> My illnesses have made me knackered.

smoked - physically exhausted or burned out

-> Grocery shopping just smoked me.

zonked - mentally tired or "out of it"

-> I am too zonked to add 2 + 2.

Can you relate? If so, what unusual words for fatigue would you add to my list?

My thanks to the The Online Slang Dictionary for inspiring my new word choices.


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, February 24, 2011

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

LesCorsetsLeFuretParis18cutBImage via Wikipedia
Here is my last post to wrap up a month of discussion about using forms, logs and data to become a better fibromyalgia scientist (or detective if you prefer.)

As I mentioned last week, today I want to acquaint you with a multi-purpose daily tracking form that can help you root out the cause of a specific problem or track your response when you make changes to your routine, medications or lifestyle. It's a combination of three different forms that I have used in the past; I just took the time to combine them and make one form that is very user-friendly and super easy to complete.



Feel free to download this form and utilize it for your personal use.

Let me also give you some suggestion on how to use this form:
  1. Complete the entire form daily to collect comprehensive data on your overall health.
  2. Complete this form periodically, for a few days or a week at a time, to reassess and identify changes in your symptoms, pain level or sleep patterns.
  3. Complete just a few sections to gather information about topics that interest you, like cataloging your symptoms or gauging your activity level.
  4. Use it to track your response to a new medication or lifestyle change. For example, complete the sleep section a week prior to and for a few weeks after you start a new sleep medication or start using a CPAP machine to gauge your response to treatment.
  5. Use completed forms to identify trends, especially those that are subtle and hard to see. For example, you may find that higher symptoms levels occur anywhere from 24 to 72 hours after high activity days or that fighting with your family is just as physically exhausting as going grocery shopping.
  6. Use this form to answer a question about your symptoms. For example, "Why am I always more tired on Monday?" or "Did I plan, pace and rest enough to avoid getting flared up from the special event I attended?"
  7. Use completed forms to identify issues that you want to discuss with your health care team or that might benefit from some lifestyle changes.
I am so excited about this new form that I have set a goal for myself to start completing it on a daily basis. With the form's simple check box and fill-in-the-blank format, it only takes me a few minutes at the end of the day to complete. Easy, quick and straight-forward--now that is what I like in a tracking form.

I can't wait to see what new discoveries I make just by taking a few minutes to track my activities, symptoms, stressors, sleep and more on a daily basis. I can't wait to hear what you discover too, so please share with me your experiences and feedback on using this form.

Creative Commons License
Enhanced by Zemanta


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, February 23, 2011

My Lonely Hours

Moon at nightImage via Wikipedia
Welcome to my lonely hours--the ones from right after my husband goes to bed and to the time I finally get sleepy enough to join him. More often than not, I find myself waiting well into the single digit hours of the morning for this to happen.

Now I have always been something of a "night owl," but my current predicament is quite a different thing altogether. It seems that my body has decided that I currently reside somewhere in the South Pacific and has scheduled itself accordingly. My sleep situation prompts some interesting discussions in my home about my need to move to Australia. It's too bad moving won't really solve my problem...

I've seen sleep specialists and they don't seem to really have anything to offer me in the form of a solution. Frustrated, I recently searched online for answers and found this very interesting article about delayed phase sleep disorder at the HealthCommunities.com Sleep Channel. Since there is so much good information there, I'm only going to highlight some points I think are worth repeating:

  • Delayed phase sleep disorder means that a person cannot fall asleep until the early morning hours (usually after 3 a.m.) and only when the body signals that it is ready for sleep.
  • Waking up during "normal" morning hours is extremely difficult, so much so that it is advised that driving at this time of day be avoided since sleep deprivation can make this very dangerous.
  • It appears that persons with serious illness often develop this disorder, perhaps because the body's healing process causes disruption to the normal circadian rhythm.
  • Contrary to what I have been told, chronotherapy to return to a "normal" sleep schedule actually involves progressively going to bed and waking up 3 hours later than the previous night until the desired bedtime is achieved.

I am intrigued by the possibility that my body's attempts to heal itself from my multitude of chronic illnesses might be the root cause and reason why this particular sleep disorder plagues me. Which makes me think that if somehow the burden of my illnesses could be reduced I might be able to get back into a more normal sleep pattern. However, this is easier said than done.

So for now, I find it easier to go with the flow and live life within the confines of my body's altered schedule. Which in practical terms means learning to make the best of long, lonely nights. My overnight routine to help me reach sleepland includes a combination of:

  • solo piano music
  • warm cups of herbal tea
  • good books
  • the pursuit of writing
  • the company of my sleeping pets
  • and a growing appreciation for the peace and quiet these hours of the night bring.


Let me share with you some of my favorite solo piano pieces from Pandora:




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, February 21, 2011

Question of the Week: Got Side Effects?

Drug Side EffectsImage by tamahaji via Flickr
I got another rude reminder of how challenging and risky fibromyalgia treatment can be. Over the weekend a friend wound up in the hospital due to side effects from the drug Savella.

About a year ago I discovered that Savella causes high blood pressure in about 20% of the people who take it. Given I already have some weirdness with my heart courtesy of dysautonomia, like an elevated pulse and wonky blood pressure, my neurologist and I decided to pass on trying this particular drug.

My friend obviously decided to try it when her doctor suggested it. I learned from her posts on Facebook that she experienced a resting heart rate of 120, which prompted an admission to the hospital for cardiac monitoring.

Last year, another friend who lives with chronic fatigue and fibromyalgia experienced serotonin syndrome from the combination of her medications and had to be weaned off them. It was a painful and traumatic experience for her, which I know is huge understatement for how scary and disruptive this experience was for her.

Even I have landed in the Emergency Room because of medication side effects. Seems that the prescription sleep aid Lunesta went from being helpful to keeping me up all night over the course of a few years. I went to the ER when I felt agitated after taking it the last and final time because I was concerned this was a serious adverse reaction. After being given several different medications to treat the side effects, I was finally able to go home and fall sleep some 5 hours after taking it...

Which brings me to some truths about the whole subject of taking medications to treat fibromyalgia symptoms:
  • Experts currently estimate that medications only help 30 to 40% of people living with fibromyalgia
  • Only three medications are FDA approved for treating fibromyalgia: Lyrica, Cymbalta and Savella
  • Finding medications that will work for you can involve a lot of trial-and-error and patience
  • Many medications used to treat fibromyalgia symptoms are prescribed off-label, meaning that these medications are not specifically FDA approved for use in patients with fibromyalgia
  • Fibromyalgia can make people even more sensitive to medications, which may translate into more side effects and/or the need for smaller than normal doses
  • Even when you find a medication that proves helpful, it may become less effective over time
  • Most medications are only studied in short-term trials, which means there is a lack of information about which medications work best for fibromyalgia in the long haul
I can't begin to tell you how disappointed I am that there aren't better treatment options for fibromyalgia. I also have lost count of the number of medications I have tried without success, most discontinued by my doctors due to intolerable side effects. Which makes me extremely cautious about trying any new medication. I'm definitely "once bitten, twice shy."

So I can't help but wonder what your experiences have been with medication side effects and if they have affected your willingness to try a new medication when you doctor suggests one.

Share your thoughts and advice on this subject here or over on the OMA&P! Facebook page. I am curious to hear what you have to say and look forward to reading all your comments.

Creative Commons License
Enhanced by Zemanta


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, February 18, 2011

Dysautonomia Do and Redo

Frustration (was: threesixtyfive | day 244)Image by Sybren A. Stüvel via Flickr
We all have our pet peeves. My husband's pet peeve is having to do something over because it wasn't done correctly the first time. He always says, "Let's do this right now because I don't want to have to redo it later."

I admit this is good advice, advice I try and follow myself, especially when attempting something that uses up a lot of my scarce and precious energy. Which is why I am so upset that the dysautonomia consultation and autonomic testing I had back in October seems to have been a total waste of my energy.

A got a copy of the consultation report in November from my referring doctor and the first thing I noticed was that several of the recommendations I was given verbally didn't make it into the report. I read it a second time and the report failed to give to my health care team specific information about my dysautonomia symptoms or suggestions for treating them. On the third read, it wasn't even clear if my diagnosis of dysautonomia had been confirmed!

Then my neurologist and primary care doctors asked why I wasn't taken off my beta-blocker a few days before the tilt table test and other autonomic tests.

Aargh!

So now I'm in the process of arranging another consultation with the experts at the Mayo Clinic. I was really hoping to avoid all that this is going to entail, including out-of-state travel and a week away from home. This is why I opted for an evaluation from a Southern California clinic last year. But since that didn't work out, I'm resigning myself to the fact that this medical trip is needed while trying not to kick myself in the butt for not just going this route in the first place.

In case you were wondering, yes, I have gotten the "do and redo" lecture from my husband about this, plus a "they better do everything while we are out there" one. Sigh.

At this point, all I'm asking the universe for is the energy to get through this and the ability to just grin and bear all the hassles. Plus the words to address my husband's concerns because I can't do this without his help. Most of all, I need to get one rocking consultation report out of this, because if I can get this in hand all the trouble to travel for medical care will be both justified and quickly forgotten.

PS If you are looking for a good description of what to expect during a tilt table test, check out Ash's Health Blog. Perhaps I'll be able to write my own description of the process when I am finally administered the test correctly.




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, February 17, 2011

Mission 2011: Mapping Your Energy Boundaries

filling out forms to make an offer on a house....Image by tray via Flickr
So last week I discussed doing a fibromyalgia time study to help you find your baseline level of functioning. This week I am wondering what you think of that form and how your time studies are coming along.

By the way, have you stopped and rewarded yourself for investing the time and energy into becoming a better fibromyalgia scientist/detective? After all, treating yourself to something special for all your small, baby steps helps maintain your motivation over the long haul.

This week I am providing you with another form that will help you pull everything together and map your energy boundaries. Take a look at the form I created below:



If you like what you see, you can download a copy of the form for your own personal use.

If you have your three days worth of time studies, completing this energy boundary map will be very easy. Just grab a calculator and add up the time you spent doing physical, mental and social activities. When you are done, you will have a clearer picture of how much energy you have on an average day and where you allocate that energy.

Then look at your comfort zones and your average pain and fatigue levels and decide if this is where you want to be.

If the answer is yes, then woohoo!

If the answer is maybe or no, it's time to take stock and consider making some changes. Using this form, you can identify the areas where you'll want to modify, simplify, ask for help, cut back and/or say no. You might also see the benefits of adding more rest or sleep to your schedule, tackling stressors, minimizing triggers for sensitivities, making more time for fun or talking to someone about your issues for advice and support.

This map of your energy boundaries lets you see the thin line that separates good days from bad days. If you can see the line, then you know when you are about to cross it and land into higher symptoms/lower functioning territory. Seeing the line will help you make better choices about how you are going to allocate your precious and limited energy each day.

Combined with the time study data, this completed form gives you specific, concrete information about your level of functioning that you can share with your health care team. Just think, at your next doctor's appointment you can say, "I am having problems doing (x,y or z). This activity increases my pain/fatigue. Is there anything we can do to address this, maybe with medication, lifestyle changes or physical/occupational therapy, so I can have some improvement in this area?"

Next week I'm wrapped up this month's topic by sharing some more ideas on how you can use forms and logs to do things like root out the cause of specific problems or track your response when you make changes to your routine, medications or lifestyle.

Creative Commons License
Enhanced by Zemanta


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, February 16, 2011

Wordless Wednesday: Rain


Creative Commons License


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, February 15, 2011

Reader Questions: You Asked, I Answered

Tetranecro Pain VersionImage via Wikipedia
I challenged you to Ask Me Anything and I'm glad you have taken me up on my offer. So today I want to answer some questions I have recently received:

Q. How do I get pain relief for chronic myalgia? My general doctor seems useless and can't find the cause. I've been to every specialist to find the cause. Do I have to personally schedule an appointment with a pain specialist?

A. I am fortunate enough to have the type of medical insurance that allows me to self-refer to a specialist. I have taken advantage of this option numerous times during both the diagnosis and treatment phases of my chronic pain conditions. If you don't have that option, don't give up and let your managed care health insurance stand in the way of getting the care you need. I suggest calling them if your doctor won't give you a referral and ask to speak to a care manager. You might also consider changing primary care doctors to see if another physician might be better able to address your medical needs.

Personally, I have seen specialists in many different fields, including neurology, rheumatology, rehabilitative medicine and pain management. Some I see on an ongoing basis; others consult and then ask my primary care doctor to treat me and follow-up on their recommendations.

While I agree that having your primary care doctor do the referring is the ideal situation, I have come to accept that primary care doctors don't always do this.


Honestly, I think you have answered your question for yourself when you asked, "Do I have to personally schedule an appointment with a pain specialist?" One way to look at this task is that it is burdensome, time-consuming and stressful. You can also look at it as taking a step towards actively participating in your health care and being your own health advocate.

I think it is reasonable to ask for pain relief from your doctors and I hope you find the answers and treatment options you are seeking. That said, I know from my own experiences that finding pain relief is sometimes a difficult, complex, perplexing and often elusive proposition. However, I have not given up hope that science will continue to discover what causes physical pain and, more importantly, what it takes to treat it fully and successfully.

Q. How do you deal with the sadness and or guilt that comes along with missing family or other types of social occasions? I find that's when it hits me the most. It's like my condition slaps me in the face. I would love to hear how you get through that.

A. Being a very outgoing and social person, this is a consequence of chronic illness I actively confront on a ongoing basis.

I have gone from feeling very sad and inadequate in my ability to be a good friend to accepting that I live life at a much different pace now which precludes a lot of social interactions. I'd like to say that I have processed this issue and have come to a place of understanding and peace, but the truth is my feelings on this subject can vary as much as the seasons.

In the end, what helps me the most is keeping these thoughts in mind:
  • Socializing is an important part of my life.
  • Socializing takes a lot of energy, both physically and mentally.
  • I choose to actively manage my chronic pain and fatigue, which often means limiting my social interactions.
  • I can ignore my need to limit my social interactions, but then I must be willing to live with flare-ups and a lower level of functioning.
  • I can choose to be unhappy about my limited social life and steep in my grief and guilt.
  • I can choose to relish the social life I can participate in and allow those moments to sustain me until the next social event I am able to attend.
I've also explored many new and different ways to connect with friends, family and others, like Twitter, Facebook, blogs, online forums and chats and Skype. Sure, they aren't the same as the social activities I used to be able to do when I was "healthy." But I have realized that comparing my current self with my past self prevent me from enjoying what I can do now despite my chronic illnesses.

So yes, chronic illness still does occasionally slap me in the face, but really it's just a reminder that I need to keep reframing my perspective on my current situation and focusing on what is possible so I don't miss out on what socializing I can enjoy.

Creative Commons License
Enhanced by Zemanta


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, February 14, 2011

Question of the Week: Who Do You Love?

Early 20th century Valentine's Day card, showi...Image via Wikipedia
Did you know that there isn't a lot of information about who Saint Valentine really was or what he did to achieve sainthood in the Catholic Church?

Or that the celebration that happens every February 14th got its start after the publication of the 14th century poem Parliament of Foules by Geoffry Chaucer?

This seems like a dubious start to a holiday that is supposed to celebrate love and affection between intimate companions.

Although, to be honest, I wonder why a holiday that celebrates love focuses just on couples. I mean, doesn't it defeat the purpose of love to spend a day moping and unhappy because you don't have a Valentine? Even if you have a Valentine, what good is to be be disappointed or upset with them if they forgot to get a card/gift/flowers/dinner reservations? Which brings me to the loving message I'd like to share with all of you this St. Valentine's Day 2011...

One of the greatest commandments in the Christian religious tradition is "Love your neighbor as yourself." Which, in light of how we treat each other in the world today, makes me think that the problem isn't a lack of love for others, but a lack of love for ourselves. After all, we cannot love others very well if we have little love for ourselves.

I think this is an especially big hurdle for those of us who live lives touched by illness, sadness and despair, because sometimes we mistake these conditions for proof that we are less than we truly are. It doesn't help that there are others out there who jump to this conclusion too and don't hesitate to share this erroneous information with us.

I think Valentine's Day is the perfect time to start loving ourselves more and recognizing that our situations and illnesses aren't judgments about who we are. It's time to embrace the truth about ourselves and who we are so we can choose joy, always. It's time to love ourselves first so that we can truly, compassionately and empathetically love the other people in our lives.

So really, the answer to this week's question is a win-win: if you don't have a Valentine whose name you would use to answer this query this year, another wonderfully acceptable answer to my question is "I love myself."

My love to all of you too.

So... who do you love??? Leave your answer here or over on the Oh My Aches and Pains Facebook page and fill my day with a little comment love.

Creative Commons License
Enhanced by Zemanta


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, February 11, 2011

Mission 2011: Time to Find Your Baseline

start start startImage by emdot via FlickrWelcome back to another edition of Mission 2011.

February is all about becoming a better fibromyalgia detective or scientist through observation, notetaking and analysis. It sounds like some pretty brainy stuff, but I promise to make it simple and doable in my own signature fibro-friendly way!

Today I want to get you started discovering your baseline level of pain, fatigue and functioning. The premise behind this task is a pretty basic one: knowing your baseline helps you track improvement (or lack thereof) when you make changes to your routine, lifestyle and medical care.

So what is the best tool to use to figure out your baseline? I think it is a time study, which is a
proven business tool used to figure out where an employee's time and effort are expended on a daily basis. After all, living with fibromyalgia is like having a 24/7/365 job that's all about taking care of yourself.

Let me introduce my Fibromyalgia Time Study Worksheet I created just for you and have inserted below. I've modified it to track things like your activities, pain and fatigue levels and body position. Page two has lots of helpful advice on how to complete the form and interpret the data you collect.

Let me also add these suggestions:
  • Aim for three days worth of logs to get yourself started. Complete these logs over the span of a week or two, depending on your schedule and available time.
  • Choose to gather data on days that are the most typical of your current lifestyle.
  • Try to record your activities every half hour you are awake; setting an alarm on a watch, clock or kitchen timer can keep you on track all day long.

(Like what you see? Click here to download or print this form.)

So what are you going to do with the data from three days of logs?

Next week, I am going to help you map out the boundaries of your energy envelope using the information you gather. After all, you can't stay in your envelope and be flare-up free if you have no idea what your envelope looks like.


Creative Commons License
Enhanced by Zemanta


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, February 10, 2011

Social Media: A Source of Fibromyalgia Hate? #lovebeatshate

Discrimination, Diversity, Equal rightsImage via Wikipedia(Note: Today I am participating in another edition of the Love Beats Hate blogging event. Please check back tomorrow for my weekly Mission 2011 post.)

It hard to believe that social media, my largest reservoir of support in dealing with my chronic illnesses, is also used by people to deny the existence of fibromyalgia and bash people living with it.

I don't deny that sometimes living with fibromyalgia is just bull$#*@! However, I know fibromyalgia is not some made up illness people are feigning in order to qualify for disability benefits, get out of working, be lazy, evoke sympathy from others, etc., etc., etc. So it's hard not to hate back when other people in social media level these and a myriad of other accusations against people living with fibromyalgia.

Yes, I know, there is free speech and everyone is entitled to their own opinion. If this "free speech" really bothers me, of course I can just ignore or block these people and their negative campaigns. I can also interpret these attacks as just another example of the "but you don't look sick" mentality that seems to prevent others from understanding and supporting people who live with invisible illnesses. Which maybe is my cue to do more to raise awareness and educate people about what living with a chronic, invisible illness "looks" like.

But let's be honest. Since there is no way to prove without a shadow of a doubt that someone has fibromyalgia using an objective test, like an x-ray, MRI or blood sample, the door of doubt is open. If the door is open, people will go there. It doesn't make what they say and do online right, but it does unfortunately give them an opening to question and cast dispersions.

While the online fibromyalgia community does its best to shut down these hate sites, pages and discussions, it isn't just individuals online who are prejudice against fibromyalgia.

For example, did you know that many long-term disability insurance carriers limit benefits they pay out to people diagnosed with fibromyalgia? I didn't until I was denied ongoing benefits after two years of being disabled by my severe fibromyalgia symptoms. When I appealed their decision, the long-term disability insurance company didn't even try to build a case denying I had fibromyalgia. No, quite the contrary, they reviewed my medical records and declared that fibromyalgia was my primary disability.

The message they sent me was something like: "Why yes, she is disabled, but unfortunately we don't provide long-term disability benefits for people with fibromyalgia after two years. Sorry." I image them laughing all the way to the bank with the money they saved giving me the shaft.

So when I saw an advertisement on Facebook recruiting volunteers who have fibromyalgia for a study of an investigational blood test to confirm the diagnosis, I wrote the number down. I called yesterday to volunteer and my appointment is on March 2nd. From where I stand, giving two ounces of blood and 45 minutes of my time seems like a small price to pay to help prove that fibromyalgia does exists and confirm without a shadow of a doubt that I have it.

Quite frankly, any efforts made to get the diagnosis of fibromyalgia out of the garbage can and into the realm of cold, hard scientific fact will have my support and, if possible, my participation.

So you see, it's not just love that beats hate. I'm rooting for science to find a way to prove the diagnosis of fibromyalgia and silence the nay-sayers, the discriminators and the disbelievers. Until then, I am hopeful that the power of social media will continue to empower people living with fibromyalgia to take a stand against online hate and send a clear message that bashing people due to their invisible illnesses will not be tolerated.


Creative Commons License
Enhanced by Zemanta


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, February 9, 2011

Wordless Wednesday: Life at a Different Pace



Creative Commons License


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, February 8, 2011

What I Learned in Dog Training

Service Dogs of Hawaii Fi-Do, Training Session...Image by Beverly & Pack via Flickr
I try to be a good dog owner, a.k.a. pet parent. Trust me, it's a lot of work.

I think one essential part of being a good pet parent is training my dogs in basic obedience. Thankfully I have help in the form of group dog training classes at my local pet store.

Funny thing is, while my dog and I attend together, I'm getting the feeling that class is really more about training me, the pet parent, than it is about training my dogs.

For example, I got some useful feedback that the tone of my voice wasn't conducive to training. Seems I sound cross when I give my poodle Brunswick commands in class. Apparently the instructor heard me asking him to do things using something closer to my "Bad dog!" voice.

To show that I do pay attention in class, let me share with you that the proper way to ask a dog to perform a command is to say it using a soft, sweet, high-pitched, happy tone. You know, the excited "Good dog!" voice. Unfortunately, knowing this and doing this are two different things.

So while I listened and accepted this helpful feedback the instructor gave me, I found myself immediately connecting to how tired I was feeling in the moment.

After all, class starts with me already feeling fatigued from just getting there. Then factor in a whole hour being in a small classroom space filled with 8 dogs and 8+ owners (sometimes both pet parents come to class). Oh, and don't forget to add all the standing, walking and sitting on an uncomfortable stool. So really, for me, attending
dog training class means completing an hour-long physical, mental and emotional endurance test I chose to put myself through in the hopes that it will benefit me and my dogs.

So of course I am sounding grumpy by the end of class when I am wiped out on multiple levels, ready to take the next two days off to recover and frustrated when I ask Brunswick to heel for the twelfth time and he's just not doing it.

All things considered, that's still good feedback from the instructor, and something I need to think about when it comes to other aspects of my life. I mean, if I am sounding irritable in dog class, I can only imagine how ornery I sound when I am at home and having a bad fibromyalgia flare-up day.

I guess you could argue that those around me should understand when I have a bad day and have the presence of mind not to react to my pain and fatigue-induced bad mood. But after that feedback, I had to wonder: if my dog stops listening to me when I am grouchy, how do the humans in my life react to disagreeable me, either consciously or unconsciously? Do they stop listening, roll their eyes and wish I was in a better mood?

Plus what effect does using a crabby tone of voice have on me when I listen to myself speak?

Which leads me to contemplate a really big picture question: do I really want to be using a grumpy tone of voice and be potentially setting the stage for things in my life to go in a grumpy direction?

Isn't it amazing the things I learn in dog training? Good Selena! What a smart girl I am...

O.K., so can I have a treat now?

Creative Commons License
Enhanced by Zemanta


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

Question of the Week: What Have You Learned from Your Chronic Illness?

Ballet lessons 1Image by Oude School via Flickr
There is a saying that fits this week's question well:

Too many people miss the silver lining
because they are expecting gold.
~Maurice Setter

This quote speaks to me because I am guilty of missing silver linings too.

Early on in my chronic illness, I was so focused on finding a cure, the gold, that I lost focus of all other aspects of my life. Coming to that crossroads where I faced that this wasn't going away in spite of all my best efforts, I realized I needed to start living my life again. That meant finding or creating good out of a miserable situation.

Now I know that chronic illness is many things. One aspect I haven't discussed much is its role as a teacher. In preparing my answer to this week's question, I've realized that illness has taught me many, many things over the past 23 years, so much so that I am not sure how to answer this parallel question, "Who would you be without chronic illness?"

I can honestly say that because of these experiences with illness, I've uncovered glimpses of my true self. Or to put it another way, I simply can not imagine who I would be today if not for illness. Although oddly enough, I suspect I might be more unhappy and less fulfilled that I am today.

So in taking a closer look at my own silver linings, I begin with this list of ten things that chronic illness has taught me.
  1. to be patient and forgiving with myself
  2. to create structure and routine in my life
  3. to let go of the past, live in the present and remain hopeful about the future
  4. to be creative, flexible and resourceful
  5. to ask for what I want ... and be OK when someone tells me that they can't help me get it
  6. to recognize what true friendship looks like
  7. to be a container gardener
  8. to be a writer and blogger
  9. to be still long enough to recognize and enjoy the moments of happiness each day brings
  10. to know that bliss is a purring kitten in my arms and a warm puppy in my lap
So what have you learned from your chronic illness? Embrace your silver linings and share just one thing, either here in a comment or over at the Oh My Aches and Pains! Facebook page.


Creative Commons License
Enhanced by Zemanta


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

Saturday, February 5, 2011

Winter: My Season of Discontent

Yosemite Valley in winterImage via Wikipedia
Now is the winter of our discontent
Made glorious summer by this sun...

~William Shakespeare

The longer I live with chronic pain and chronic fatigue, the more I dread the coming of winter.

Now all things considered, winter in sunny Southern California is mild compared to other places in the U.S., Canada and the world. Since I have visited other places where there is snow on the ground during winter, I know how lucky I am. Which makes me almost hesitant to write this particular post...

But even here in Southern California, Mother Nature causes enough weather changes to upset my delicate and fragile balance and move the needle of my fibromyalgia pain into the flare-up zone.

Upon reflection, I have lived almost my entire life here in Los Angeles and have never really found the winters to be unbearable. That is, until I started living with chronic illness. No, I think my poor body, weaken by constant pain, fatigue and chronic infection, now overreacts to the winter weather changes and creates the physical discontent that is with me during the entire winter season.

In the spirit of the season, I wrote a series of posts in December about dealing with flare-ups. I also wrote some posts about being flare-up back in September too. Reviewing them now, these posts contain some really good insight and advice on this topic. You'll want to check them out:

However, there is one key coping strategy previously unmentioned in these posts that I use to combat winter flare-ups: acceptance.

I have come to accept that I really cannot do anything to prevent weather-related flare-ups. The only thing I can do is accept that they are a part of winter and learn to expect them. Which for all practical purposes makes the winter months some of my least productive ones when it comes to getting things done.

So come back soon, summer sun, and warm this sore and achy body. Until then, you'll find me combating my winter discontent bundled up in fleece clothing, underneath layers of blankets and attached to a heating pad. During the day, I am using all my flare-up coping strategies and counting the days until your triumphant return. At night, I'm dreaming about gloriously warm weather.


Creative Commons License
Enhanced by Zemanta


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, February 3, 2011

Mission 2011: Mary Poppins and the Symptom Log

Screenshot of Julie Andrews from the trailer f...Image via Wikipedia
About half-way through the month of January, I had a "light bulb" moment. I realized that I overlooked a topic that would have been the logical start for my Mission 2011. In hindsight, I probably should have kicked things off by charting my symptoms and assessing my baseline, then tracking what I am doing and the resulting improvement (or lack thereof) every day.

You know that little "UGH!" noise you are making right now, either out loud or in your head? Yeah, I am making it too. That gut reaction prevented me from seeing that the only way I am going to be able to detect a
1/2 to 1% improvement each month is by charting and tracking my symptoms.

Luckily this is just month two, so I can correct my oversight and choose to tackle this topic in February.

A Spoonful of Sugar

But before I dive into a pile of forms and papers, it's time to address my internal reluctance to wholly embrace this practice. After all, we can all agree that not wanting to do something makes it much harder to get that something done, even when we recognize it ultimately benefits us.

Time to cue Mary Poppins and let her remind us that, "A spoonful of sugar helps the medicine go down."

Lucky for you, I have two spoonfuls of sugar to share.

1) See the Benefits

I think my friend Felicia Fibro makes this point for me brilliantly. In her post Fibro Feelings - Sunny Day, she talks about a recent bout of insomnia. She recognized that it was something new and different in her routine. Initially she couldn't quite figure out what was causing it, but then she looked at her symptom logs and discovered that she had experienced insomnia at the same time last year. With this new clue, she was able to recognize that anticipation of the annual party she and her Helpful Hubby throw at the beginning of February was causing her insomnia.

Armed with this knowledge, she decided to start planning earlier, writing down list of things to be done and then using a calendar to plan out the timing. With everything out of her head and on paper, she hoped knowing that everything was being taken care of would help her relax more and sleep better.

Felicia is a great example of a fibromyalgia scientist. In a practical application of the scientific method, she identified a problem, made some observations, analyzed her data and arrived at a conclusion that helped her improve her symptoms.

2) Reap the Rewards

O.K., so maybe calling yourself a scientist (or detective, or researcher) isn't going to motivate you or make this any easier...

So what will motivate you to do this? How about about some chocolate? Or some "me" time doing something you love but hardly ever do? How about promising yourself you'll set aside time to have fun every single day?

There is a reason that everyone from psychologists and teachers to animal trainers and parents swear by this; good old-fashioned positive reinforcement is a powerful tool to get you moving in the direction of doing something you would much rather not be doing. The bottom line is that treats motivate everyone. But here is a little secret: you need to break out the really good treats to get yourself to do the really unappealing things.

Focus on the Treats

So this week I am going to spend my time coming up with a list of rewards that will motivate me to start keeping a symptom log once again. I'm not going to even think about the logs themselves, I'm just going to dream about the treats. Well, that and I am going to tap into my inner Dana Scully and embrace how cool it is to solve mysteries using science.

Until next week, why don't you sing along with me:
A Spoonful of Sugar
Written by:
Richard M. Sherman and Robert B. Sherman


[Spoken]

In ev'ry job that must be done,

There is an element of fun.
You find the fun and snap!
The job's a game...

[Sung]

And ev'ry task you undertake

Becomes a piece of cake
A lark! A spree! It's very clear to see that...

A Spoonful of sugar helps the medicine go down.



Creative Commons License
Enhanced by Zemanta


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, February 2, 2011

Opportunities for You
to Give Me a Hand Up...


Have I mentioned lately that I really, really, really, really like blogging?

My Blogging Mission

I started a blog as a way to keep family and friends up-to-date about my struggles with chronic illness. Quite unexpectedly, blogging lead to discovering a whole community of other patient bloggers, tweeps on Twitter and Facebookers who are trying to live their best lives with chronic illnesses just like me.

Now I am working even harder to make my content relevant and useful to any sick chick (or dude) surfing the Web looking for information, ideas, tips and tricks to live better despite health challenges.

Monetizing My Blog

Along the way, I also decided to monetize my blog. That's a fancy way of saying that I put ads from the affiliate programs I belong to on my blog.

So when you visit these places using links on my blog - Amazon.com, Mighty Leaf Tea, HeartMath's emWave, Relax the Back or Hay House Publications  - and make a purchase, a small percentage comes back to me as a "thank you" from the merchant for allocating space to them here on OMA&P! Hopefully, all those clicks will add up over time.

The OMA&P! Way

  • I display advertisements because I know they fit with something fibro-friendly you are already doing: purchasing goods online.
  • I feature products and services that I use personally.
  • I pick companies with which I have had good customer experiences.
  • I ask for your feedback to ensure your experiences with my advertisers are good ones too.
  • I choose ads that are relevant to my blog.
  • I make sure that the ads are nice to look at and blend into my blog design.

The Next Phase

In addition to the ads already on my blog, I am going to try two more monetization opportunities on my blog in the coming months.

I Sell Mary Kay

I've been keeping this a secret, but today I want you to know that I sell Mary Kay. I have been using Mary Kay skin care and cosmetics since 1999 and became a consultant back in 2003. I put my Mary Kay business on hold when I became chronically ill, but I recently decided to try and see if I can make the Mary Kay opportunity work with my current health situation.

As an introductory offer to jump-start my comeback, I am offering a 10% discount on all orders. That is in addition to free shipping on every order and a 100% satisfaction guarantee. Mention the code OMA&P! when you contact me to receive this discount.

The Oh My Aches and Pains! CafePress Store

I am working with a graphic designer to translate some of the core concepts and phrases from my blog into designs you'll feel proud to be seen wearing on a t-shirt or be holding in your hand as a coffee mug. The goal of the Oh My Aches and Pains! CafePress store is to create products that help raise awareness and provide you with tangible reminders about strategies that can help you manage your symptoms. Look for the premiere of the store coming soon. You won't want to miss it as I'll be celebrating the grand opening with item giveaways from the new store. By the way... I'd like to collaborate with graphic designers and artists living with chronic illness to create additional logos and designs for my store. Please contact me if you are interested in working together.

YOU Open Doors of Possibility For Me

Monetizing will not make me a millionaire, but it does give me some spending money I can use to make a difference in my own life. It also helps pay for my blogging expenses, like domain name registration, blog design services and blogging courses. Ultimately, I'd love it if your support could send me to a blogging conference, like Blogher or Blog World Expo.

All I Ask...

I'm not asking for a handout, I'm asking for a hand up. Keep coming to enjoy the great articles here at Oh My Aches and Pains! and, if you can, repay the favor by making a purchase from one of the advertisers on my blog. Thank you for reading and supporting Oh My Aches and Pains!

(Fellow bloggers, learn more about affiliate marketing. You can join the LinkShare Referral Program for free!)


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

Wordless Wednesday: Left Behind


Creative Commons License


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