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.

Thoughts About Where We Are on Fibromylagia Awareness Day 2011

I recently Googled "Why do we have awareness days?" and got page after page of search results on all kinds of different awareness days.

One person said they had a calendar that featured at least one awareness event for each day of the year. Now that seems like quite a lot of causes to keep track of every year. Another person suggested that an awareness day should be: a day of action...that will focus on grass-roots activism organized by local activists. I'm not exactly sure what that means, but that sounds like a lot of action.

Truth is, besides writing this post, I'm not sure what I am supposed to be doing today on Fibromyalgia Awareness Day 2011.

With three FDA approved drugs and a whole series of drug company commercial talking about fibromyalgia, I have to question whether we need a day to make everyone aware that fibromylagia exists. Yeah, I know the point of those commercials was to sell drugs, but I think they also increased awareness and legitimized fibromyalgia. Which I guess lends credibility to the saying, "All publicity is good publicity."

Because of these drug discoveries, it seems inconceivable to me that someone in the medical profession would deny the existence of fibromylagia when there are three drugs they can prescribe to attempt to treat it.

While three drugs are a start, these drugs aren't a cure. More research and development is needed to uncover more treatments. I've read that only 30% of people living with fibromyalgia response positively to the medications used to treat it. Clearly there is more work to be done in this area.

Pinpointing what triggers fibromyalgia would help treatments advance too, not to mention lead to prevention strategies so that no one else needed to suffer daily chronic pain and fatigue.

Plus I know there is more education that needs to happen about what fibromyalgia truly is. There is emerging evidence that fibromyalgia is a brain disorder. That is why drugs like Lyrica, Cymbalta and Savella, which have an effect on the brain and nervous system, seem to help some people with fibromyalgia. Which makes me wonder if the treatment of fibromyalgia will eventually transition from rheumatologists to neurologists.

By the way, knowing that fibromyalgia is a brain disorder helps us understand why it is so difficult to treat. I've heard medical professionals say that neurological conditions present some of the biggest challenges in medicine today. Having spent time at the neurology clinic, both for myself and with my dad who had Alzheimer's disease, I have first-hand knowledge of this fact. The brain remains the last unconquered frontier in medicine. Not only is it still unclear all the things the brain does, there currently are no treatments for restoring brain function to normal once it has been altered or destroyed by illness or disease.

So I think that fibromyalgia awareness today is less about shouting "This illness is real!" and more about educating people that there is still a long way to go to successfully treat this syndrome. It is about continuing to put pressure on all the entities that fund and conduct research on fibromyalgia to keep pursuing with their efforts. I guess this also means that our cause must find a way to wrangle more resources to fund these efforts so that they produce greater results. This seems like quite a formidable task, given that there are at least 364 other worthy causes filling the calendar each and every year vying for the same limited pot of resources to make a difference for their causes too.

Which leads me to my final thought: Fibromyalgia Awareness Day is about hope. Hope that in some research lab somewhere there is a happy accident that results in the discovery of new knowledge and/or new treatments that foster better outcomes for people living with fibromyalgia today. Until that happens, I hope that someone uncovers something honest and real that can truly increase the quality of our lives while we are waiting for our medical miracle. Ultimately, I hope that people with fibromyalgia can one day regain their fullest potential, enjoy life completely and leave chronic illness behind.

I think today I am going to allow myself to daydream about that day in the future when Fibromyalgia Awareness Day is no longer on the calendar.

I'll be back tomorrow with my weekly Mission 2011 post.

A Saving Grace for When Everything Goes Wrong

Image via Wikipedia

They are not moments I like to think about, now that they are securely a part of my past. What am I talking about? The great big meltdown moments that have occurred in my life...

The First Time

The first major meltdown happened a month after I was diagnosed with leukemia. I was excited about my upcoming released from the hospital after a successful first course of chemotherapy that put my cancer into remission. While visiting me in my hospital room a day or two before that big day, my boyfriend broke up with me.

I was devastated.

The Second Time

It was eight months after I was diagnosed with type 2 diabetes, back in 1999. I was hellbent on managing my diabetes with diet and exercise only. Part of my treatment plan was seeing a dietitian for regular consultations. Those first eight months I obsessively watched every single piece of food I put in my mouth and religiously worked out at least three times a week. I got my blood sugars under excellent control, but could not succeed in losing a single pound.

Mentioning this to the dietitian, she replied, "I guess you must have a farmer body. You have to be moving for most of your day in order for you to lose weigh."

What the heck! Well, screw this then...

The Third Time

Talk about adding insult to injury. The trip-and-fall accident that put me on my journey with chronic pain and chronic fatigue happened while I was at work. Which meant my initial medical treatment didn't come from my own personal doctor, but a contracted occupational medicine clinic. Not only did they not help, the treatments they prescribed made my pain worse. Oh yeah, and when I reported that my pain was getting worse, not better, I was accused of not wanting to go back to work.

So after three weeks, when I was discharged from medical care and told I could go back to work--the medical staff totally ignoring, disregarding, and disbelieving my very real and very disabling pain--it felt like the last straw that broke the proverbial camel's back.

I was so despondent by the time I made it to my own doctor's office that I told him I couldn't take it anymore.

The Last Time

A former rheumatologist convinced me that I needed to treat my chronic Hepatitis C infection since he thought it was implicated in my fibromyalgia symptoms. I got enrolled into a clinical study in August 2007. About two weeks in, all hell broke loose. I developed multiple viral and bacterial infections: eye infection, double ear infections, sinus infection and severe upper respiratory infection.

A week later I was in the Emergency Room being evaluated for a possible heart attack.

Turns out, I was in bad shape due to a flare-up of my undiagnosed dysautonomia, with symptoms reaching a higher level of intensity. The symptoms made me feel so agitated that I honestly thought I was going to have to be sedated. After several unreturned calls to my rheumatologist, a staff member at the Cedars Sinai Chronic Pain and Fibromyalgia Program intervened on my behalf and got the doctor to call me back. He prescribed a beta-blocker that made a world of difference. But it was too late...

The Hepatitis C treatment, subsequent hospitalization and dysautonomia symptom overload left me bed-bound and facing a long three month climb back to my previous level of functioning.

A Saving Grace

So what helped me weather these storms and get to a better place? My saving grace can be summed up with the one amazing quote (thanks to my friend @sonjathegreat for posting this yesterday on Twitter):

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

~Thich Nhat Hanh

Quite honestly, it is the hope that tomorrow will be a better day that has helped me get through all these times of emotional upheaval and illness. Hope helps with all the everyday setbacks, adversities and hardships too. I've come to rely on the fact that the promise of a better tomorrow makes all my misfortunes bearable.

My saving grace is that hope heals.

What is your saving grace? Share yours with me when you leave me some comment love...

My Chronic Pain Toolkit

Image by Reavel via Flickr

I can honestly say I have tried every pain treatment recommended to me and yet I still have not gotten the measure of pain relief that I wanted. It has been disappointing to say the least. Early on in my journey with chronic pain, trying and failing to get relief took a toll on me. I found pain to be physically, emotionally and spiritually taxing. After a year and a half of failed attempts, I entered a period of crisis, where I was faced with a choice to continue to struggle against my pain or just accept it as part of my life. During this crisis, I rediscovered three powerful tools that help me get through each and every day. These tools are faith, hope and love.

FAITH

I'm not a terribly religious person. I like to joke that I am still recovering from a childhood of Catholic grade school and all-girls Catholic high school. So while I acknowledge that faith in God or a higher power certainly can help, the faith I rediscovered was faith in myself. I have relearned to believe in myself and my ability to survive and thrive every day. Now I know that, no matter what life or pain throws my way, I will figure out a way to get through the day. The biggest boost to my self-belief was learning self-help techniques to manage my pain. Learning and applying skills like pacing, planning, pre-emptive rest, saying no and more help me gain a sense of control over my chronic pain and bolster my self-esteem.

HOPE

The second tool that helps me live with chronic pain is hope. While faith helps me get through each day, hope helps me get to sleep every night. I used to go to sleep each night hoping that tomorrow my pain would be gone. But when I decided to accept that chronic pain was going to be part of my life for the foreseeable future, I stopped the wishful thinking and substituted it for something more realistic. Now I have hope that if I can apply my self-help pain management techniques today, I will achieve small improvements in my functioning and quality of life tomorrow. I haven't given up hope that maybe some day someone will figure out fibromyalgia and develop a treatment that works for me. But until then, my hopes for small and achievable change help me look forward to another day with chronic pain.

LOVE

We all want love in our lives and we often look to others for it. But the third tool in my toolkit isn't love from others, but love for myself. I've found that I can't hate my pain without hating myself. After all, this is my body, and more specifically my dysfunctional nervous system, causing my pain symptoms. If I feel ongoing, constant hatred towards my pain, my life starts to revolve around hate. If I have compassion for my body, which I truly believe wants me to be healthy and happy, my life revolves around love. I know my body wants me to be happy and healthy because I can see how eagerly it responds to the self-help techniques I use to manage my pain symptoms. Yes, I love myself and I love my body, and through compassion and understanding, I am starting to love my pain.

As you can see, my chronic pain toolkit contains some unconventional items. While they can't take my pain away, they do something even more important: they help me live my best life despite chronic pain. Yes, each day I live with chronic pain becomes an act of faith, an act of hope and an act of love.