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Wednesday, March 31, 2010

Linky Love: On Health Care Reform

A surgical team from Wilford Hall Medical Cent...Image via Wikipedia


I'm no expert when it comes to commenting on health care reform, but I traveled the blogosphere and found some experts in the subject. Fortunately for me, many of them just participated in the recent edition of the Grand Rounds blog carnival posted at the blog See First. This blog carnival features both doctor and health care/patient bloggers, which makes for an interesting mix of perspectives and opinions. You can read all the submissions by clicking here: Grand Rounds: Health Care Reform Edition.

My favorite post comes from health and patient blogger Laurie Edwards at A Chronic Dose. Laurie has been dealing with chronic illness since the day she was born and talks about how having pre-existing conditions has effect her relationship with health insurance. I have to say, she and I are on the same page in many ways, and her post echoes many of the same sentiments as my post from yesterday: No More Pre-Existing Medical Conditions Exclusions. Click here to read Laurie's take:
Where's the Patient in Health Care Reform?

Today's post is short and sweet as I want to get back to reading all the great posts from yesterday's edition of Grand Rounds. I'll be back tomorrow with more of my own thoughts on health care reform, this time inspired by the caption on a picture. Intrigued? Come back tomorrow and check it out...



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Tuesday, March 30, 2010

No More Pre-Existing Medical Conditions Exclusions

A Medicare card, with several areas of the car...Image via Wikipedia


In response to my blog post from yesterday, Health Care Reform Won't Affect Me, a friend reminded me that a big part of the heath care reform bill dealt with pre-existing medical conditions. And all you need to do is look at my blog header for a pretty complete list of my pre-existing medical conditions. Can it be, for once in my life, I temporarily forgot about them? I guess being on Medicare can do that...

Truth is, in my recent past, choices in my working life centered around my mission to always be covered by health insurance.

But let's start at the beginning. I consider myself absolutely lucky that when I received my cancer diagnosis at age 22 I was still covered under both of my parents' health insurance policies. That's right, I had double coverage. I also consider myself fortunate that I continued to be covered under their insurance past my 23rd birthday because my cancer diagnosis, with its 33% chance of survival, qualified me as a
disabled dependent. I remained on my parents' insurance until I secured my first full-time job as a social worker with full medical benefits after I completed my undergraduate and graduate degrees at age 27.

Once I became employed, all my career choices included health insurance as a rule-out criteria, i.e. no health insurance benefits meant I would not consider the job. That criteria changed a bit after I got married in 1998. As long as one of us had access to health insurance through an employer, the other was free to pursue work that didn't offer it. We came a bit close to catastrophe in the early '00s when we were on COBRA benefits and neither one of us were working jobs that offered health benefits. But somehow everything worked out in our favor and we both landed in jobs that offered both of us medical benefits once again.

The bottom line is that once I finished my cancer treatment, I accepted the fact that I could never qualify for an individual health insurance policy. I resigned myself to the fact that as long as I was single, I needed to work for an employer with a medium to large workforce. Being married opened the door to expanded possibilities, because now my husband helped share the burden of obtaining health insurance. But even with a little wiggle room, health insurance always colored our job decisions.

Certainly becoming disabled skewed my quest for health insurance in my favor. Never did I think I would be on Medicare at this point in my life. No, my plan was to work, build up a career, gain experience and go back to school to earn a PhD and teach social work. I would qualify for MediCare when I reached 65 (or is it 67 by then?) and was enjoying a semi-retired life with some work, some travel and some more time with my spouse.

Ah, but life is what happens to you while you're busy making other plans.

Let me acknowledge how truly lucky I have been when it comes to being continuously covered by health insurance. I do not take it for granted. I need to add it to my list of lucky breaks, which also include finding good parking spaces and great places to live. I realize not everyone in my situation finds themselves in such good fortune, which is why I honestly and truly hope that the new health care reform bill provision ensuring health insurance coverage for children and adults with pre-existing conditions takes effect as intended.

If I am ever able to work once again, I would relish the opportunity to walk down my career path without being held back from certain opportunities because of considerations around health insurance. What a world that would be!
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Monday, March 29, 2010

Health Care Reform Won't Affect Me

Health Care Rally for a Public Option in front...Image by leoncillo sabino via Flickr


I am not making this up. I actually went to the Washington Post website, entered in a bit of information about my current health coverage and was told that health care reform will not affect me. I admit I feel a bit disappointed.

After all, this is the legislation that inspired Vice President Biden's on-microphone gaffe, "This is a big f***ing deal."

To be fair, when Congress writes a bill purported to be as big as the novel War and Peace (which, by the way, had 1225 pages in the original edition and 1475 pages in the most recent reprint), it obviously is going to take some time to read all the provisions and even longer to figure out how to implement them. One sound bite I heard was that most of the provisions won't take effect until 2014. I know from experience that a lot can happen in four years.

Still, if health care reform is going to cost the US $1 trillion dollars (that's 12 zeros), I'd like to think that I am going to get some benefit from it. Then I realized that, as long as I am disable and receiving Medicare, I won't get any direct benefits from this legislation. More than that, I realized that anyone on Medicare, Medicaid or covered by employer-sponsored medical insurance won't get anything tangible. That includes the disabled, elderly, welfare recipients and those working adults and families receiving medical benefit from an employer.

This legislation supposedly helps people get medical insurance. It is supposed to provide subsidies to those who can not afford insurance. Has anyone mentioned yet how they are going to determine who gets subsidized and who doesn't? How much new paperwork and bureaucracy will be created to help make this determination? If it is anything like the process for qualifying for other public benefits, like disability or welfare, this is going to be a nightmare.

What does making health insurance mandatory mean for those who now must purchase insurance? I wonder if it just opens the door to medical care only to have it slammed shut again when the newly insured are overwhelmed by out-of-pocket expenses (co-pays, deductibles, co-insurance and out-of-network reduced coverage) they can not afford. So will the newly insured use their plan if they can not afford the associated out-of-pocket expenses?

Which brings me to the question, does medical insurance = health care?

Plus how many people are going to actively avoid getting insurance. After all, car insurance is mandatory for all drivers here in California and yet there are still uninsured drivers. Will there by a self-pay option that allows people to opt out of getting medical insurance?

For me, the biggest unanswered question is whether making for-profit health insurance coverage mandatory really the way to go here. I still think that health care needs to be non-profit, patient-centered and evidence-based. I believe that the money generated in health care system needs to be reinvested into things like medical research, practitioner continuing education, patient supportive services like social work and upgrades to medical equipment.

I fear that this heath care reform doesn't get to the heart of the matter. After all, having health insurance doesn't insure that people will be healthy. Personally, I'd rather see Congress invest $1 trillion dollars into improvements in agriculture and food production to make fresh, minimally-processed, healthy and nutritious foodstuffs affordable and available to everyone. With so many health care costs tied to what gets put onto the American dinner plate, it seems to me ensuring that everyone eats more healthfully would be a better way to spend my tax dollars than supporting the for-profit health insurance industry.

Which makes me wonder, did we just do this ass-backwards?

Yes, I am disappointed that health care reform won't affect me and seems to do nothing to make the health care system more accessible, effective, affordable, patient-friendly or efficient.

O.K., I've share my two cents, now it is time to tell me what you think. How can you let me know your opinion? By leaving me a comment of course!


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Friday, March 26, 2010

OMA&P! featured in PFAM Blog Carnival #20

KeyboardImage by orangeacid via Flickr


It's time again for another edition to the Patients for a Moment (PFAM) blog carnival, this time hosted by Vladimir at WellBook.org. He asked the question:

My question is about adapting - the ol' "bend but don't break." If you have a chronic illness, you may not be able to pursue the goals you'd have if you were healthy. My question therefore is, "how have you learned to adapt around your illness in order to accomplish things that are important to you - even though your illness may prevent you from achieving the goals you had before you got sick?"


And here is my answer:

Selena can't "just do it" anymore. Dealing with doctors who don't get it hasn't been fun, but she's shrunk down her ambitions and she's found ways to remain active in ways that her illness allows. Getting a dog has helped her to continue taking walks and do milder forms of exercise than before she was ill: "Just Do It"--The Cure for Fibromyalgia?


But hey, but don't just take my word for it. Check out all the patient bloggers featured in this edition of PFAM by clicking here: PFAM 20 Adapting Around Illness. Plus Vladimir asks us all to sign up and check out Well Book while we are there. It's a site full of helpful health tracking tools, support, advice and motivation.

If you are a fellow blogger, consider joining the PFAM carnival. Get the scoop on how you can participate by visiting the PFAM website.
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Thursday, March 25, 2010

Send Comfort by the Spoonful

Two left hands forming an outline of a heart s...Image via Wikipedia


I think that Spoonful of Comfort is an inspired company making a great product and supporting good causes by donating some of their profits to charity.

Like so many other great innovations, the idea behind this company arose from tragedy. In 2007, Marti Bowes Wymer's mother was diagnosed with lung cancer. Since traveling to Canada from Florida to see her mother wasn't possible, Marti wanted to send her something to show that she was thinking about her. Trying to come up with the prefect gift to send her, she thought about how her mother used to make her chicken soup when she wasn't feeling well.

And thus the concept behind a Spoonful of Comfort took form.

Today you can send chicken soup--old-fashioned, cooked in small batches, all natural and made with love--to someone you care about who is under the weather or feeling blue. What a wonderful way to show your ill family member in another state or a homesick college student that you care. Complete your order by adding homemade rolls and oatmeal raisin cookies. Not only will your thoughtful and unique food gift cheer the recipient and fill their belly, it will also support The American Cancer Society in the memory of Mona Bowes.

They'll feel better and so will you when you send the gift of chicken soup from a Spoonful of Comfort.
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Wednesday, March 24, 2010

I'm in the Chronic Babe Blog Carnival

chronic babe buttonsImage by jima via Flickr


There is a new blog carnival in town, featuring members of the Chronic Babe Forum started by Jenni Prokopy of ChronicBabe.com. I guess I should say it is the unofficial Chronic Babe Blog Carnival as I'm not sure if Jenni has weighed in yet on whether we can used her trademark name. I have a feeling she is on board though; she posted a note about the carnival under the Chronic Bits section of her website Monday.

The first inaugural edition of this blog carnival was posted by The Fibrochondriac and you can read it by clicking here: A Carnival of Our Own…

The second edition, which includes my post My Favorite Fibromyalgia Coping Strategy, was just posted Monday by Annie at It's Time To Get Over How Fragile You Are. (Did I mention how much I love the title of her blog?) You can read this edition by clicking here: Chronic Babe Bloggers' Blog Carnival (Favorite and Most-Useful Coping Mechanisms)

So I am off to read all the highlighted posts and connect with my fellow Chronic Babe bloggers. I am also volunteering to host this blog carnival here at OMA&P! on May 3rd. Come join me at the Chronic Babe forum and participate in the blog carnival too. And while you are at the Chronic Babe forum, don't forget to add me as a friend.

Enjoy your Wednesday!

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Tuesday, March 23, 2010

Diabetes-Friendly: My Own Food Revolution

Miniature Food Dollhouse - Polymer Clay Mini F...Image by PetitPlat by sk_ via Flickr

Writing my post from yesterday about fibro-friendly, my favorite fibromyalgia coping strategy, got me thinking about my prior experiences in making life diabetes-friendly. Well, that and watching the new TV show, Jamie Oliver's Food Revolution.

I realized that before my life with fibromyalgia and chronic pain, I learned to deal with life with Type 2 diabetes.

I don't talk much about my diabetes, probably because after living with it for over 10 years now, coping with diabetes is a routine part of my life. What a difference time makes. Ten years ago I struggled to understand what having diabetes meant to me and my relationship with food.

When I was first diagnosed, I used food diaries to get a handle of my situation. I spent a lot of time recording and analyzing my food choices. So when I watched the preview of Food Revolution last Sunday, I really empathized with the people in Huntington, West Virginia who were asked to take the proverbial good, hard look at what they were eating and feeding the children in the school cafeteria.

I find myself at a loss to explain the exact emotional state that gets triggered when I am asked to review my food diaries. If I had to guess, I would say it is fear and anger that my food choices being judged, plus some frustration and resentment over having to limit some of the foods I really enjoy but don't fit with my new eating plan. I think I saw some of those same emotions in the people of Huntington, West Virginia.

What being diabetic means to me today is choosing to limit food portion sizes and balancing meals between protein, carbs and fat and eating lots of vegetables. The fact that most people do not eat this way, nor do most restaurants and fast food chains serve up food this way, makes diabetic eating a challenge. I'm not immune to the societal trends towards fast food, sugar and junk food, but for the most part I can resist making poor food choices. But eating healthy becomes really hard when the people around me eat whatever they want, whenever they want it.

I tribute my success in changing my eating habits to my Grandma Ann. She introduced me to vegetables at a young age and taught me how to both eat and enjoy them. She modeled good food choices for me and because I revered and respected her, I made big efforts to like the new foods she asked me to eat. She inspired my love of cooking as well (though I admit that more recently fibromyalgia has made cooking more difficult to do.) So really all I needed to do was tweak my eating behavior and tip the scale a bit more towards vegetables and away from carbs.

So I do get it when the folks in Huntington get upset when asked to change how they eat. I get it why they resist change. What they are being asked to do is counter-cultural, out of the norm and completely foreign to the status quo. I just hope they can see beyond their resistance to the compelling reasons behind the need for change. Because making good food choices, and teaching their children to do the same, might help them all avoid having to learn to make their lives diabetes-friendly.


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Sunday, March 21, 2010

My Favorite Fibromyalgia Coping Strategy


What is my favorite fibromyalgia coping strategy? The lovely daisy graphic at the bottom of my posts column is a clue ... it is making my life more fibro-friendly!

Fibro-friendly is the term I've coined for the process I've learned to make every day activities doable for someone like me, someone who lives with the chronic pain and chronic fatigue of fibromyalgia on a daily basis. Allow me to tell you the story of how I was taught to make my life more fibro-friendly..


I was introduced to the concept of fibro-friendly when I enrolled in the Chronic Pain and Fibromyalgia Program at Cedars-Sinai Medical Center in April 2006. Teaching me how to accomplish this goal was Judy, an occupational therapist. Over the next six weeks, she explored with the group what activities where difficult for us to do and suggested strategies to make them easier. I came away from the program with an assignment: to make growing a vegetable garden fibro-friendly.

With Judy's suggestions, I rose to the challenge and became hooked on container gardening. It began with purchasing lightweight containers and potting soil at my local hardware store and asking my husband to help me set the containers up on the patio. On that same trip, I also purchased a heavy duty 5 gallon plastic paint pail to store tools inside and a bucket seat for the pail so it could serve double-duty as a gardening seat (see the picture above.)

Once the containers were set up and accessible from a seated position, nothing could stop me from getting my hands dirty. Using the skills of pacing and planning, I established a regular gardening routine and worked in the my container garden, pacing myself 15 minutes at a time. Since gardening is a seasonal activity, I have learned to identify specific gardening goals each month and break down big activities like soil preparation, seed starting, transplanting, mulching, fertilizing, weeding and harvesting into smaller, doable weekly steps.

With successful completion of this project, confidence in my new title as Ms. Fibro-Friendly emerged.

I want to teach you how to be fibro-friendly too. So in addition to sharing my success story, I took the time to make a list of some of the occupational therapy strategies Judy taught me. Here is a sample of the techniques involved in making life more fibro-friendly:

  • adaptive equipment - from medical supplies like rolling walkers, shower benches, PikStiks and mobility scooters to ordinary helpers like step stools, chairs, a recliner and a lap desk
  • assistive technology - the speech recognition software that makes it possible for me to blog and write (Dragon NaturallySpeaking); the Logitech MX Air Mouse that I can hold in my hand and point at the computer screen
  • self-care skills - pacing, planning, resting and setting limits
  • body positioning - knowing that reclining is more restful than sitting and sitting is more restful that standing
  • activity modification - sitting while gardening, showering, cooking and cleaning; making meals using the oven or a crock pot instead of standing at the stove; using a mobility scooter while grocery shopping; exercising while lying on the bed
Learning to make daily life more fibro-friendly was a huge benefit that I reaped from attending an in-person pain rehabilitation program. To continued my education, I followed up by enrolling in the CFIDS & Fibromyalgia Self Help program online. I found this online program very helpful in reinforcing the principles I learned and encouraging me to continue to apply these concepts to my real-world life.

For those of you who do not have access to an in-person program, I highly recommend the CFIDS & Fibromyalgia Self Help program to teach, support and encourage you.

But here is the real secret: I believe that you can apply these principles and make life with any chronic illness more friendly, no matter what obstacles your chronic illness presents. So I challenge you to make your life more ___-friendly too.


Leave me a comment and share your success stories.

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Saturday, March 20, 2010

"Just Do It"--The Cure for Fibromyalgia?


I feel so frustrated and flared-up I just want to scream! Aargh!

I had to go to a "fibromyalgia evaluation" Friday, conducted by a doctor I hope I NEVER see again. Hence the reason I am currently flared-up. I had a feeling this was going to happen and I did plan accordingly. Robert drove me to the appointment, which was in downtown L.A., and I scheduled no appointments for next week, so I have plenty of time to rest and re-cooperate.

I try so hard not to let medical professionals who just don't get it about fibromyalgia and chronic pain get under my skin. But on the ride home, I just lost it. It has been a long time since I have had a tender point examination, so I forgot just how painful one is. It's also been a long time since a doctor lectured me on the "Just Do It" cure for fibromyalgia (FM), insinuating that I have not done everything I could to get better. Those of you with FM probably know what I am talking about. The lecture goes something like this:

If you just exercised every day, you would get better. Start with 10 minutes of aerobic exercise and build up to an hour a day. You will be very sore the next day and the next week, but you need to work through the pain and increase your activity time every week. You need to reset your pain threshold and the only way to do it is to create more pain in the short run. It might take a year or two, but it is only with daily exercise that you will get better.

Seriously?

I tried to stick up for myself. I tried to impress upon the doctor that I do exercise every day, by walking the two blocks I am able to do without seriously jeopardizing my energy envelope, creating a flare-up of my symptoms and setting the vicious cycle of post-exertional fatigue in motion. But my efforts where deflected by the comment that went something like
since most of you pain is in your torso, you need to get a pair of 5 pound weights and start exercising your arms more to increase your pain threshold there.

Seriously?

I admit there was a time in my life when I could "Just Do It." A time when I had a membership to my local YMCA and went three times a week for one hour workouts. A time when a little pain, soreness and stiffness after a workout was really no big deal, back when "no pain, no gain" meant an entirely different thing. Those were the days when fibromyalgia and chronic pain were blissfully absent from my vocabulary.

Here is the thing. I know that exercise is important, which is why I got a dog in 2008 to encourage me to walk every day. Those first two months I walked my dog every day, twice a day, about four to six blocks total in a day. I was miserable. All I succeeded in doing was increasing my pain and fatigue symptoms. My level of function decreased from about 30% of my healthy normal to about 20% of my healthy normal. But I stuck with it, because I made a commitment to being a good dog owner.

Then I broke my foot. For a while, my sister came over and walked my dog each day while I hobbled around in a cast. Then I discovered that I could walk my dog using my mobility scooter. That discovery was like a light bulb turning on. I realized that trying to walk my dog twice a day, for four to six blocks, was just too much for me. It made my quality of life decrease as my symptoms increased. In short, I was failing to live my best life despite chronic illness.

What works for me is somethings altogether different: walking half a block, riding my mobility scooter a block, walking another block, riding for a block and a half and then walking the last half block. I am able to do this because my husband comes with me for dog walks and rides my scooter when I am walking. If I am having a bad day, I can ride more and walk less. If it is a good day, I can walk a little bit more.

So in a roundabout way, getting a dog did help me develop a habit of walking every day. I just had to modified how I walked and make it fibro-friendly. Using this approach, my level of functioning is back to around 30% and I have energy to do the other things I need and want to do each day that make living a life with chronic illness more bearable.

So you see, the "Just Do It" method doesn't work for me anymore. I am writing this blog post to put this question out to the blogosphere:
does this approach work for anyone with fibromyalgia? Please leave a comment here and share your experiences. Better yet, write a blog post with your response and I will add it to the bottom of this post. Let's figure out once and for all if "Just Do It" is a pearl of wisdom or a pile of crap.


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Friday, March 19, 2010

My Brain is Confused ... and Confusing

1/365 [dazed & confused]Image by PhotoJonny via Flickr

Yesterday I went to get the results from my brain SPECT scan that I had a week ago last Thursday. I've been anxious all week to get my result. You see, I got a message the day afterward from my neurologist's office, "Please call and schedule an appointment with the doctor to get you results." I interpreted the message as a bad sign, a sign that something was wrong.

So I got myself mentally prepared by expecting the worse and hoping for the best. I explored my fears to find my greatest one. I acknowledged that my worst fear is contracting Alzheimer's disease like my Dad. Then I found hope on the Internet that, if caught early by a SPECT scan, early treatment could slow progression of the disease. Then I rallied my support system, including asking my hubby to come with me yesterday to my appointment to hold my hand and keep me calm. After all this, I settled down and settled into a week-long wait.

Jump to today and the good news is that there isn't anything seriously or obviously wrong with my brain. In fact, some of the findings may just be what they call a "normal variation." Other findings appear more mysterious. Yes, my brain isn't quite right, but it isn't clear why. It is possible that I suffered some unrecognized brain trauma from my trip-and-fall accident, even though I don't remember hitting my head. It is possible these changes are related to being a person living with fibromyalgia. In fact, since my medical history is so complicated, there may be a whole variety of explanations for the strange findings.

I don't really know what my results mean and I left more confused than anything. My doctor tried to reassure me that she will follow-up and get a hard copy of the scan images, talk to the radiologist and do some research. This is definitely "to be continued." But for me, this whole exercise brought home to fact that medicine doesn't always have the answers.

I guess the best news is it wasn't the scary, urgent, "get in here to get your results" event the doctor's office staff presented it to be. But it is frustrating to have to wait even longer to understand my results.


Won't you wait with me as this story unfolds?

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Thursday, March 18, 2010

Time Travel Is Tiring

Star Trek Nurse / Medical PinImage by vernon_dutton via Flickr


I love science fiction. I devour episodes of Star Trek and Battlestar Galatica. I've seen every Star Wars film, most multiple times. I want to live in that future, where you get somewhere instantly by transporter, meet humanoids from across the universe and benefit from advanced medicine,, where most human diseases are distant memories from the past.

Sigh.

Yeah, this post isn't about science fiction. This post is about how going from standard time to daylight savings time seems to have caused a flare-up in my fibromyalgia symptoms. I know, it sounds like science fiction, but if you could witness first hand how I've been dragging myself up and around since Sunday, you'd know I was telling the truth.

Of course, it could be the sudden change in the weather, from cold to warm, but I do better in the Spring and Summer than the Fall and Winter. It could be payback from being sick with an upper respiratory infection for most of February. Perhaps my return to my normal schedule after being a homebody during the month of February has pushed me out of my energy envelope. But then I talked to my best friend last night and she said," You know, you mentioned the same thing when we turned the clocks back in the Fall."

I guess time travel is just too tiring for me and I think it is time for me to plan accordingly. Next time we move the hands on the clock forward or backward, I need to plan to take a week off to adjust. A week to just stay close to home, rest and relax, rent my favorite futuristic movies from Netflix and start my own private bi-annual sci-fi marathon.

Beam me up, Scotty!

What do you think? Does changing the clock twice a year have an impact on your chronic illness? Leave a comment sharing your experiences.
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Tuesday, March 16, 2010

Lucky Number 13

13Image by wiccked via Flickr

O.K. I only mention this because I noticed a change on my blog page.

On the right side bar, I have a box where readers can click and become a follower of my blog. I recently added the widget back to my blog because I saw that I had acquired several followers and wanted to encourage others to do the same. You see, my readers inspire me to keep blogging and get better at it. Letting me know you are a reader by becoming a follower is a really nice way to give me a pat on my virtual back and say, "Good job."

So here is that thing. I used to have 13 followers, but recently that number went down to 12. I know there are all sorts of superstitions around the number 13, so in my head I am thinking that someone didn't want me to have bad luck with 13 followers.

Just so you know, the number 13 doesn't really phase me. Sure, I was diagnosed with cancer on the 13th, but I also found out I was in remission on the 13th. So in the end, it all balances out for me.

So today I am asking my readers to be bold and become my 13th (14th, 15th, 16th...) blog follower. I dare you to click the button. Follow my blog and show me you care. I wish I could offer you a prize or something ... is my undying gratitude enough?

And while you are at it, if you are on Facebook, check out Networked Blogs and follow OMA&P! there too.

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Monday, March 15, 2010

I want a new drug...

Walgreen'sImage by Curtis Gregory Perry via Flickr


I want a new drug,

One that does what it should.
One that won't make me feel too bad,
One that won't make me feel too good...

~Huey Lewis & the News


I've been doing some Internet research and came across two new-to-me drugs that I want to try, one for my type 2 diabetes and one for my fibromylagia and sleep disorders.

Ordinarily I don't get that excited about new medications, mostly because my experiences have not been all that positive. Most medications I tried for fibromyalgia were long on side-effects and short on positive results. I've had my fair share of problems with diabetes drugs too...a sulfonylurea drug actually made my blood sugar go up instead of down, probably because sulfonylureas are related to the sulfa class of drugs which I am allergic to, but my doctor prescribed it for me anyway.

So what am I all excited about?

Nabilone

The first drug I want to try is Nabilone, a synthetic cannabinoid used for nausea and neuropathic pain. That would be marijuana in pill form. I admit I have tried medical marijuana and it did help with my pain, especially when I experienced a flare-up. But I am not a smoker and there is something about marijuana that make me feel a bit anxious, both from a legal perspective and a physical 'I just took a hit and now I feel paranoid' standpoint. The good news is that the standardized pill form eliminates the risks from smoking, addiction and getting busted by the cops. I am also hoping the pill takes out whatever chemicals cause the marijuana-induced anxiety too.

What caught my eye was research results from Canada showing that Nabilone helped persons with fibromyalgia get better sleep, and I am all about getting better sleep. In the article stated that Nabilone didn't help fibromyalgia pain, which is O.K. by me. Liked I have discussed before, I think if I could just get some better sleep I might have a reduction in my fibromyalgia pain as a result.

Click here to read the article I found: The Effects of Nabilone on Sleep in Fibromyalgia: Results of a Randomized Controlled Trial


Victoza

I already use the injectable medication Byetta, an incretin mimetic, for my type 2 diabetes. I use this medication twice a day, before breakfast and dinner. It does a great job of keeping my postprandial (post meal) blood sugar under control, but only lasts about 3 hours after the injection. That means that I go without medication at lunch and do not have a long acting diabetes drug in my system for most of the day.

I have been waiting to hear about a longer acting form of Byetta, but it seems that Novo-Nordisk has beat the makers of Byetta, Amylin and Lilly, to the punch.

Victoza is the first FDA approved long acting incretin mimetic. It only requires one injection per day and last 24 hours. That means that it works both after meals and throughout the day. That's good news for me, since I have something called "dawn syndrome" which causes my blood sugar to go up overnight, even though I am not eating.

I can't wait to talk to my diabetologist Dr. Anne Peters at my next appointment in April to see if Victoza is right for me. In the meantime, you can read the article I found about this new diabetes medication by clicking here: New Diabetes Drug Victoza Approved: Victoza Is a Once-Daily Injection for Adults With Type 2 Diabetes.


I'll update you if my doctors agree and allow me to try these two drugs. In the meantime, I've got that Huey Lewis and the News song stuck in my head. Is it stuck in your head too?


I want a new drug,
One that won't make me sick,
One that won' make me crash my car,
Or make me feel three feet thick.

I want a new drug,
One that won't hurt my head,
One that won't make my mouth too dry,
Or make my eyes too red.

One that won't make me nervous,
Wondering what to do...


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Friday, March 12, 2010

A Weird Thank You to the Universe

peanut butter chocolate cupcake from Grand Cen...Image by Chris Blakeley via Flickr


On the suggestion of one of my friends, I signed up for this daily email called Notes from the Universe. The other day I got this note:

When something difficult or painful happens, Selena, always look to see what it makes possible that wouldn't have otherwise been possible.

Like a new adventure, a closer friendship, or chocolate in your peanut butter.

Everything makes you better,


The Universe



O.K., so first I chuckled and then I thought. You know what? I actually came up with a list of things that are part of my life now because I became disabled by my chronic illnesses, thus proving the adage When one door closes, another opens. So here are my new open doors, courtesy of my life with chronic illness:
  1. Container gardening.
  2. Writing and blogging.
  3. Freedom from the demon 'multi-tasking.'
  4. Bird watching.
  5. Owning a dog.
  6. Turning a feral kitten into a house cat.
  7. Knifty (loom) knitting.
  8. Watching all the great programming on PBS.
  9. Enrolling in a writing class.
  10. Attending a book group.
Oh, and I have also met and/or reconnected with some very interesting people in the past 5 and 1/2 years too. People I might not have had the pleasure to meet and interact with if I was busy, busy, busy living my old life. Some important people too, who educated me about the need for ongoing medical follow-up because I am a long-term cancer survivor.

It is with the benefit of time that I can see the new possibilities my difficult and painful new life with chronic illness has brought me. So thank you, Universe, for the new opportunities. Who knows how many more discoveries I will make!



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Thursday, March 11, 2010

Don't Panic! I'm Getting a Grip...

PET scan of a normal 20-year-old brain.Image via Wikipedia


I freaked out just a little bit today.

I got an unexpected call from my neurologist's office asking me to call back and schedule an appointment with the doctor so she could go over the results on my SPECT brain scan done yesterday. Now granted, I planned to call and schedule a follow-up appointment today as I was told my doctor would have the results by Friday, next week Monday the latest. But what is up with my doctor calling me? I always call them.

Then I got worried. Early results? Is that a bad thing? Did they find something?

Since I found myself already on the road, I decided to just go there. I went down the road of worry. I had myself a big, whopping catastrophizing session. I just let go and let every horrible thought about my scan results enter my mind. I allowed myself a few, short minutes to let all the worries out.

I won't freak you out with the details. But it worked. After my catastrophizing session, I found myself able to calm down and get refocused.

I reminded myself that it was my questions that prompted my doctor to order the SPECT scan. I wondered out loud at my last appointment if my brain was damaged from the chemotherapy I received 22 years ago. After all, I've been diagnosed with dysautonomia secondary to my cancer treatment. Plus I have fibromyalgia, a pain disorder thought to be linked to the brain's inability to process pain signals correctly. So she sent me for this scan that can tell her if my brain is damaged and where, based on brain blood flow.

Then I reminded myself of this article that I found when I researched what a SPECT scan was. Researchers in France found that persons living with fibromyalgia have abnormally increased blood flow in the part of the brain that processes pain intensity and abnormally low blood flow in the area of the brain that processes the emotional response to pain. The conclusion of the study stated that fibromyalgia may not be such an invisible illness after all.

So if there is something the radiologist found on my scan, chances are the results support the fact that I really do have fibromyalgia and it is all in my brain. This may not be a bad thing. It may be the validation and respect my real illness deserves.

So I'll let you know after my appointment, next Thursday, March 18. That's the earliest date I could get so Robert can come with me and provide support as needed. A week seems like a long time to wait. So until then, I'll be re-reading this post, taking deep breaths, focusing on positive thoughts and staying in the moment.


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Wednesday, March 10, 2010

Bits and Pieces

Rendering of human brain.Image via Wikipedia


Today I share a smattering of the thoughts that are running through my brain. Although let's be honest; bits and pieces probably describes the functional capacity of my brain right now! I'll know for sure when I get the results of the SPECT brain scan I'll be getting later today. I've already located some articles about how the brain of a person with fibromyalgia is different on SPECT than the brain of a normal person.

But I digress...

BITS and PIECES

Getting ready to leave the house begins 24 hours before the actual leaving. It is quite a production. For starters, I contend with figuring out 24 hours in advance if I can keep an appointment so I can always cancel 24 hours in advance and avoid a "missed appointment" fee. So you can imagine how miffed I was when I got 4 hours notice on Monday that my appointment later that day was canceled because my doctor called in sick.


My friend is upset with me because I decided to keep honoring the original No Phone Zone pledge I signed back in January 2010. She wants to start calling me again at midnight from her car on her way home from work. I worry about her driving distracted because of the other distracted, drowsy and drunk drivers she might encounter at that hour on her way home. I am keeping my pledge because I care about her, but I don't think she sees it that way. I want to figure out another time we can talk, but I know that is complicated by my sleep disorders. My skewed sleep schedule places me at 'just getting up' around the time she is 'just getting to work.'


Speak of cell phones, I just realized the my blog post title from yesterday was grammatically incorrect. *sigh* I changed it, but it has already gone out into the universe displaying my fibro-fog influenced writing style. You'd think I could at LEAST get the title correct...


I experienced a huge malware/spyware infection around the time I hosted the Patients for a Moment blog carnival back in February from which I am STILL recovering. I cannot believe how difficult it is to find solutions to my computer problems. I literally spent hours and hours surfing tech forums, posting questions and waiting for answers, and taking 'leaps of faith' downloading fix it programs and trying them out. I believe that it is only through my persistence that I finally found solutions to my problems.


Finally, I use a lot of Google products: Blogger, Feedburner and Chrome to name a few. And lately I have been having a lot of problems with Blogger, Feedburner and Chrome. So I go to the HELP forums, search for answers and, finding none, post questions. Why is it I never get a response? Which leads to the bigger question: How can a company as big as Google not have better customer service? So I put my question out on Twitter to @Google to see if I get an answer.

Beuller?



Let's see what my blog post tomorrow looks like after they inject me with technetium-99m this afternoon--SPECT is a nuclear medicine scan by the way. Maybe I'll glow-in-the-dark afterward. Wish me luck...



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Tuesday, March 9, 2010

Did Oprah Change Her 'No Cell Phone' Pledge?

In my opinion, it is not the act of talking on...Image via Wikipedia


O.K., so we all reserve the right to change our minds every once in a while. But after her landmark show about cell phones and distracted driving, it seems that Oprah has changed the conditions of her No Phone Zone pledge on her website and it's left me wondering why. Here are the two pledges:

The January 18th version:

I pledge to make my car a No Phone Zone. Beginning right now, I will do my part to help put an end to distracted driving by not texting or using my phone while I am driving. I will ask other drivers I know to do the same. I pledge to make a difference.


The current version:

I pledge to make my car a No Phone Zone. Beginning right now, I will do my part to help put an end to distracted driving by pledging the safest driving behavior I can commit to (you chose one):

  • I will not text while I am driving.
  • I will not text while driving and will use only handsfree calling if I need to speak on the phone while I am driving.
  • I will not text or use my phone while I am driving. If I need to use my phone, I will pull over to the side of the road.


Oprah, you have me scratching my head.

After all, the Washington Post reported on January 26, 2010:


Ten days after a national study found that cellphones and texting were to blame for 28 percent of crashes, a report released Friday concludes that hands-free cellphones are no less distracting than those held to the ear.


So did the Bluetooth lobby get to Oprah? Or did her staff rise up in mutiny when they could no longer make work calls from their cars? Perhaps we'll never know...

But Oprah's revision of her
No Phone Zone pledge causes me some trepidation, because now my best friend Cyndie wants to resume her nightly cell phone call to me as she drives home from work. She promises to use her Bluetooth headset. But does she really need to call me from her car?

The bottom line is I feel obliged to decline her calls since I signed the original pledge, which means I don't talk or text on my cell in the car and I encourage others to refrain from doing these things too.

So sorry, Oprah, but I don't think you should have changed your mind on this subject. We need to put an end to distracted driving. Please don't give people an option to do this only halfway and half-assed. Go back to making the car a 100% Phone-Free Zone. Make everyone pledge:
"If I need to use my phone, I will pull over to the side of the road."


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Monday, March 8, 2010

Comfort Food: Breakfast in the Crockpot


Who knew? (Not me!) I made breakfast in my crockpot last week.

The recipe below made enough for me to have breakfast plus leftovers in the refrigerator for several days last week. In fact, I had so much food that I actually froze several individual portions for use at a later time. I added them to my collection of frozen single-serve crockpot soups.

Last week I acknowledged that my efforts to cook more and eat out less mean I am choosing to allocate my energy differently than I have in the past. Unfortunately, even simple crockpot cooking constitutes a large energy expenditure. I compensate by making other pursuits take a back seat on the days I prepare crockpot meals. I've also sadly noticed that the prep time estimates on the recipes I use are woefully inaccurate for a cook with fibromyalgia. As I have mention here before, life with fibromyalgia means increasing my time estimates by at least 3 times, and more often by 10 times.

On the bright side, all these crockpot meals have two nice benefits. First, for all my efforts, I wind up with several days of meals from most crockpot recipes. Thank goodness I like leftovers. Second, I stepped on the scale the other day and was delighted to find I lost 8 pounds. Amazing, considering that my previous efforts to lose weight have been wildly unsuccessful.

Maybe all those hot flashes burn calories...


CrockPot Breakfast Egg Casserole

serves 12

  • non-stick cooking spray
  • 2 lb. bag frozen tater tots
  • 12 oz. Canadian bacon, cubed
  • 1 12 oz. bag frozen chopped bell pepper and onion mix
  • 1-1/2 cups shredded Cheddar cheese
  • 12 eggs
  • 1 cup whole milk
  • season salt and pepper to taste
Spray inside of slow cooker with nonstick cooking spray. Place one third of the frozen tater tots in the slow cooker. Add one third of the Canadian bacon, pepper and onion mix and cheese. Repeat layers, ending with the cheese.

In a large bowl, beat the eggs, milk, season salt and pepper until well mixed. Pour over the ingredients in the slow cooker, cover and turn on the crockpot on LOW. Cook for 8-10 hours, until casserole is set and eggs are thoroughly cooked.

Variations:

Substitute your favorites for the potato, vegetable, bacon and cheese ingredients, like:
  • hash browns or country potatoes
  • zucchini, mushrooms, carrots, diced jalapenos and tomatoes
  • ham, fully cooked breakfast sausage or meatless sausage
  • your favorite cheese or cheese blend
The casserole itself is not very attractive but tastes delicious. Consider dressing the final product with things like shredded cheese, scallions or chives and salsa.


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Saturday, March 6, 2010

Dreams of My Own 'Mar Vista Green Garden'

Conceptual Design for Private Patio GardenImage by MaureenShaughnessy (aka MontanaRaven) via Flickr


When I bought my home 16 years ago, I had no idea I was coming to live in a community that would become synonymous with 'going green.' Apparently many of my neighbors in my community of Mar Vista in the City of Los Angeles decided to conduct their own 'green' experiments. It's spured a whole Mar Vista green movement, which has really taken off in the form of solar panels, rainwater harvesting, low water gardens and lawn replacement. There is even a Mar Vista Green Committee that is part of the Mar Vista Community Council.

Last year marked the first annual Mar Vista Green Garden showcase with tours of about 55 local homes and community garden sites. I participated in the tour last year thanks to my hubby and friend Cyndie. I saw artificial turf, landscaping using native plants, a no-water front yard sustained by just rainwater and the learning garden on the campus of Venice High School. I took lots of pictures, business cards and quick notes about what I liked and wanted to include in my own front and backyards.

All that viewing got me dreaming about my own garden renovations. How I so want to ditch the plain concrete driveway with the strip of grass down the middle in favor of driveway pavers surrounding a strip of no-water artificial turf. Yes, I am dreaming of new driveway designs, and patio designs too. I would love to transform my front yard into a beautiful low water native perennial flower container garden with a winding paver walkway, artificial turf plots for my dogs and a fountain, all surround by low fencing.

Yes, I dream of my own front yard transformed into lovely fenced-in, private dog park.

The next Mar Vista Green Garden Showcase tour is set for April 25th and I can't wait. Since I only visited a handful of gardens last year, I am looking forward to visiting a new set of 5 to 10 sites that I didn't see last year. As for making my garden dreams a reality, I'm not sure how long that will take. But with a very modest-sized urban parcel of land to contend with, I am consoled that a green makeover won't cost me an arm and leg. Which, come to think of it, is probably how a lot of my neighbors can afford the costs associated with going green.

What are your green dreams? Share them when you leave a comment.


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Friday, March 5, 2010

Tired on Top of Exhausted

MalaiseImage by selva via Flickr


I sit here wondering why I am so much more tired today. More precisely, that's tired on top of exhausted for me. So after a minute of clueless wondering, I remember that I went grocery shopping with Robert yesterday evening, my first trip out of the house in two weeks. No wonder I am tired.

Of course, being sick for three weeks hasn't helped either. I've been starting to feel like a shut-in instead of a homebody. Now that I am feeling almost all better, the crawl back up to my 'normal' can start and my goal is to avoid a flare-up along the way. Grocery shopping is a good example of the slippery slope I face: my body doesn't respond until 24 hours later with the message, "Hey, you did too much!"

Time to make the Golden Rule of Chronic Illness my mantra: If I pace I can play, if I push I will pay.







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Thursday, March 4, 2010

Blast From My Past: Social Security Benefits Help

Social Security Lips?Image by Aric Riley via Flickr


I finally got around to cleaning up my older posts that I imported from AOL Journals in 2008. With my recent rush to complete my Social Security continuing disability review, I decided to repost this entry from 4/9/2006. Qualifying for Social Security is a grueling process and I urge you to get help. Reputable benefits counselors and attorneys get paid out of your first check and the amount they are entitled to is set by Social Security. I used Jacques Chambers and I highly recommend him. He is able to work with anyone in the United States.

__________________________________________

Hello there,

I feel bad that I have so little good news to share with you about my situation, since my health does not seem to be improving. So when I got this news on Friday, I knew I had to share this with you...

I just found out that my application for Social Security Disability has been approved. It is going through the final paperwork finalization and then I will receive my first check -- not sure when, but it is coming... And I believe that I am actually going to get back benefits to October 2004, which would be very nice indeed.

I am a little surprised that I was approved so quickly; I was approved in a little over 5 months, which is good for the Federal Government. The books I have on fibromyalgia say that it is not uncommon to get turned down the first time you apply....

I attribute my success to some help that I sought from someone I met when I worked in the HIV/AIDS field. I used the services of Jacques Chambers, a benefits consultant. You can check out his services at www.helpwithbenefits.com.

Nationwide Toll-Free Number
(888) 739-2595

Local Telephone Number
(323) 665-2595

http://www.helpwithbenefits.com/clientapplication.htm


Regular (Snail) Mail:


Chambers Benefits Consulting
Jacques Chambers, CLU
2658 Griffith Park Blvd. #290
Los Angeles, CA 90039-2520


Jacques (pronounced zhak and rhymes with “doc”, like Jacques Cousteau) has spent the last ten years helping people dealing with disabilities understand and access their benefits. Prior to that he spent twenty-five years in the insurance industry, designing, selling, and servicing employee benefits programs.

I am happy that I have some good news to share (although I'm still processing mentally and emotionally what this says about my health situation).

All for now,

Selena


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