If I Could Wear My Pain Like Clothing #NHBPM

If I could wear my pain like clothing, this is what you'd see.

Invisible Illnesses, Visible Hope

Today is the beginning of National Invisible Chronic Illness Awareness Week and I am blogging, or rather vlogging, in support of this great cause.

The theme this year is:  Got An Invisible Illness?  Share your images of Visible Hope!  Which is where the vlogging comes in...

I put together images of myself from the past 8 years, during which time I have been disabled by my chronic, invisible illnesses.

I can honestly say that I have done everything I could to try and "get better" over the last 8 years. Ultimately, I learned that my doctors and other health professional could not do that for me.  Rather than be bitter or angry, I worked hard to accept this as my current reality.  That helped me switch my focus to managing my illnesses the best I could using the self-help measures I learned at the online CFIDS and Fibromyalgia Self Help program.

Today my number one priority is to do the very best job I can to take care of myself so my illnesses don't prevent me from doing the things I can do.

That doesn't mean that I have given up hope!  I still believe that one day I will feel better.  I am confident that some smart researcher will discover better medications to manage my symptoms so I can live with less pain and less fatigue.

Until then, I continue to do what I have been doing in earnest over the last 5 years: learning to live my best life despite chronic illness and inspiring you to do the same.

This is Selena (on the right.)

She lives with invisible chronic illnesses.

Her doctors can't make her better,  so she tries to live her best life despite her invisible chronic illnesses.

Her illnesses have disabled her for the past 8 years, but she still hopes one day she will feel better. 

Her hope is visible when she smiles!

Click this image to learn about the 5 day virtual conference at InvisibleIllnessWeek.com.

Wordless Wednesday: Invisible Illness Week Edition #iiwk10

Fibromyalgia Scientist Case Study: Grocery Shopping

Image via Wikipedia

Over the past few days I've been talking about how I have embraced becoming a fibromyalgia scientist (see How to Become a Fibromyalgia Scientist and  Embracing My Life as a "Fibromyalgia Scientist").  Then I went grocery shopping today with my husband and realized that despite my best efforts to make this task fibro-friendly, nothing short of a significant recovery would make this 100% easier.  Like taking a shower, grocery shopping is a workout.


The first thing I grab when I walk through the sliding glass doors is the shopping scooter the grocery store provides.  This is by far the pivotal strategy I employ that makes grocery shopping more manageable.  At this point, I make it a point to exclusively patronize the stores that I know provide shopping scooters.  I used to bring my rolling walker, but quickly realized that it wasn't the right tool for the job.  How did I come to this realization?  By reviewing my symptom levels for the next several day following a trip to the grocery store using an activity log.  I found that when I used the shopping scooter, there was definitely less "payback", i.e. increased symptoms and increased need for rest.


Not only did I need to acknowledge that I needed to use a mobility aid to grocery shop, I also had to adjust my mindset about using one---and so did my husband.  The most difficult part of having an invisible chronic illness is that you don't look sick and sometimes people give you funny looks when you pull into a disabled parking space, using a mobility aid or don't give up your seat for someone else.  What helped me get over this mental hang-up was seeing what a positive difference using these resources made in helping me better managing my symptoms.  Once I was sold on their utility, and my husband could see the difference as well, we started caring less and less about how other people judged me when I used helpers like the shopping scooter.  


My other grocery shopping strategies include:

1. Always bringing someone along with me when I go grocery shopping.  I ask them to help by loading the groceries onto the conveyor belt at the checkout and into the car.  And if I get too tired, I can ask them to drive home. 
   
2. Beating fibro-fog by always shopping with a list and having my shopping companion double-check to make sure I put everything on the list into the cart.
3. Going shopping during off-peak times, when the store is less crowded.
4. Breaking the task of putting the groceries away into steps.  First, I focus on getting the perishables into the refrigerator and leave the dry goods in the grocery bags.  Then I rest. When I am rested, I return to the kitchen and put away the dry goods.

Grocery shopping is a task that requires planning and extra rest before and afterward.  It is definitely reserved for days when I have no other plans that require me to leave the house.  As a fibromyalgia scientist, I've succeeded making it about 50% more fibro-friendly, which is significant because every little change I can make helps me manage my life with chronic illness better.

How do you cope with everyday tasks when living with chronic illness?  Leave me a comment and share your strategies.   

Oh My Aches and Pains! mentioned at Multi-Tasking Momma's blog

I am always honored when someone reads my blog and doubly so when my musings go on to inspire others. During Invisible Illness Week, Melissa aka the Multi-Tasking Momma came by for a visit and read my post 30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow.  She commented in her post Invisible Illness Linky Love:

Selena She talked about something in a way I had never considered before, but found to be so true.  In addressing question #14, Selena opened my eyes to the reason behind a phenomenon I couldn’t explain before.  People would be surprised to know that: “socializing with family and friends is more difficult for me now”.  It is for me too and I didn’t understand why.  Selena goes into more depth about it so visit her blog for the answer.

Please visit the Multi-Tasking Momma for some great reading.  My thanks to Melissa for visiting my blog.  You've given me the idea to undertake my own blog travels and pass along the "Linky Love."

How Roche Made Hepatitis C More Visible #iiwk09

Back in June of 2005, Roche Pharmaceuticals started a new campaign to raise awareness about Hepatitis CHCV) and encourage those with HCV to seek treatment. This campaign consisted of several posters like the one featured at the top of this post. As you can see, the poster raised the question, "If Hep C was attacking your face instead of your liver, you'd do something about it." Right?


Well I guess, in theory, if Hepatitis C disfigured my face I'd be trying to figure out how to make my face look better. But the assumption that it would lead me to choose HCV treatment might be a faulty one. After all, an easier option would be to just invest in some really good makeup or receive some kind of dermatolgical treatment to cover up the symptoms.

You see, I have genotype 1b and treating genotypes 1a and 1b is especially difficult. The treatment success rate for genotype 1 is about 50% --- a coin toss. Current treatment is a combination of interferon and ribaviran, which I did try back in 2007 when directed by two different rheumatologist to seek treatment as they felt my chronic HCV infection was fueling my fibromyalgia. After three weeks, I wound up in the hospital September 11, 2007. I stopped the treatment because of side-effects; side effects made severe due to impairment of my immune system and my dysautonomia which are late effects from my leukemia treatment in 1988.


I hope and pray every day that the next generation of Hepatitis C treatments, protease inhibitors, hurry up and get here. Similar to the drugs used to combat HIV, protease inhibitors hold the promise of a more tolerable and less debilitating HCV treatment. Early results from several clinical trials look very promising, but according to the hepatology team at Cedars-Sinai Medical Center, the FDA has asked that these new medications be tried in combination before final approval. That means that pharmaceutical companies like Schering, Vertex, Pharmasett and Intermune need to work together to make antiviral HCV treatment a reality.


I am encouraged by the news at the HCV Advocate website that the very first STAT-C multi-drug targeted antiviral combination clinical trial began in April 2009. Click here to read more.


Do I want to treat my chronic HCV infection? Yes! But until the treatment outcomes and options improve, I wait anxiously for HCV antivirals that might be more leukemia survivor friendly.

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My Life With Invisible Illness: Taking a Closer Look #iiwk09

Image via Wikipedia

I live with (or have lived with, in the case of my cancer) six different invisible illnesses: acute promyelocytic leukemia, hepatitis C, Type 2 diabetes, dysautonomia, fibromyalgia and chronic fatigue syndrome. Sure, when you look at me, you really can't see any of these illnesses: I look pretty much like any other human being alive on planet Earth. But looks can be deceiving, even misleading, when you struggle every day to live your best life despite chronic illness.

Sure, having an invisile illness makes it easy to pass for "normal." Other people won't know you have an illness unless you tell them. Sometimes it's better not to say anything to avoid other people's questions, quizzical or judgemental looks, prejudice, avoidance or rejection. But it's not so easy to hide your invisible illnesses from everyone; the more someone spends time with me, the more they are bound to notice that something is amiss. Which got me thinking that maybe my invisible illnesses really aren't so invisible after all. You just have to pay a little closer attention to see the signs that are visible.

I bet if you take a closer look, you will notice:

1. I catch frequent colds and flus, which often make me very ill for several weeks at a time. You'll see me in line at Costco for a flu shot every year.
   
2. I make frequent trips to a variety of doctors. You can see me regularly driving to the UCLA and Santa Monica-UCLA Medical Centers.
   
3. I frequently use medications and can often been seen pulling a pill box out of my purse or pocket. At the pharmacy, I visit so often that the pharmacist and staff greet me by my first name.
   
4. I pull a glucometer out of my purse and use it to test my blood sugar before and after meals. I also give myself a quick injection of Byetta before I eat ... I've even been so brazen as to inject right at the table in a restaurant! Hungry? I also have a snack or two in my purse for low blood sugar moments.
   
5. I keep a folding cane+seat combination in my car and use it for quick errands and doctors' appointments. Where ever I go, you'll notice that I am always looking for a place to sit down.
   
6. I can been seen almost every night walking my dog down my street using a mobility scooter. I also use my scooter at Costco, the supermarket and on my infrequent outings to places like the museum or events like concerts.
7. After years of owning and prefering a manual transmission, I no longer drive a stick shift car.
8. After years of building a career, I now can be found at home during the day, every day.
9. I wear a Medic Alert bracelet or watch every single day.
10. When I can find a space, you'll observe that I make frequent use of available handicapped parking. Watch for me to pull my handicapped placard out of my purse.
    

I guess you could call this list "The 10 Visible Signs of My Invisible Illnesses."

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