A GLIMPSE BENEATH THE MASK

There are times you get a glimpse.

Just for a moment you get to see..

how far you've come,

and how far you've yet to go.

Support groups are wonderful. There are people around you that know and understand what you're going through. You can relax, let your guard down and know that the vulnerability that you feel is in a safe place.

Most of us still have those pesky walls in place. It's easier to keep the guard up. You really don't want to admit when the pain and fatigue are at their worst how weak and powerless you really feel.

"I'm hanging in there."

"I've been better."

"I'm still smiling."

Yeah, right.

Every once in awhile someone who is newly diagnosed and still struggling comes in and exposes that raw emotion that we try so hard to keep under wraps. While it's wonderful to help and counsel someone, it's a stark reminder of what is bubbling just underneath that carefully crafted surface.

As I'm telling someone that they will find their purpose through all of this and that joy is possible, I realize how far I've come since first being diagnosed. Helping someone find their way out of the black hole and knowing there is light at the end of the tunnel is gratifying.

But it's not that simple.

There are still days that raw emotion still haunts me. I know that I still struggle with the loss of the job that I loved. There is still a part of me that identifies with my career. The mourning process, while not as bad as it was, is still there. While those feelings aren't front and center anymore I still have them. 

There is nothing easy about chronic illness. It's like there is a constant reminder that your body could betray you at any moment. I feel always on guard, ever vigilant and ever mindful that a new symptom can pop up at any moment. It's a fine line that you walk...I want to be aware but I don't want to be overly cautious. 

The walls that are constructed so that the world doesn't see your weakness also protect you against it. Maybe they need to be there so that you are able to progress, grow and keep the helplessness that chronic pain can bring at bay. I think that masks and walls are sometimes given a bad rap. 

Seeing that person struggle with the newness of all of this brings a few issues right back home.

And I'm not inviting them for a sleepover.

HEALCLICK.......THIS IS COOL!!

If you've ever felt alone,

and no one understands your symptoms.

Click here!

I got contacted by the people that are launching this website wondering if I'd be interested in promoting it.

Oh yeah!!

This is patient-centered and you're matched with others where you can discuss what has worked for you and, hopefully, help create research opportunities. I'm going to post what was sent to me and hope that we can all get behind this wonderful site.

Sign up at www.HealClick.com

Help start a patient revolution at www.indiegogo.com/projects/revolutionizing-patient-sharing

• HealClick is completely free and will always be. 

• We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. 

• Our site is for patients only. We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't. 

• Matching is what sets us apart. Our site tells gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments. 
• Start any kind of topic. If you have a question or an experience to share, we want to hear it.
• Review any type of treatment.  Tell us about your experience, and compare your results with others. 

• Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks.  

• The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymize data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html
• Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.

I really think this is cool.

I think this is really necessary.

And I think this is really visionary!

OK, everyone.....

Let's HealClick!!

IT'S BEEN A BAD DAY

I'm tired.

And it hurts,

And it's not going away,

There are days that I still don't know who I am. It seems to vary from day to day. I mean, I know the basics haven't changed but some traits seem to ebb and flow and I never know what trait is going to appear.

I was going through my closet and it started me thinking. I know....very bad thing to do. I tend to get the past and present confused. I still think that I'm able to run around in 4 inch heels and, at the drop of a hat, get up run around all day long. Maybe I shouldn't have started looking at my shoes.  I always get depressed when I see the beautiful shoes and realize that I can't wear them anymore without pain. Maybe it would be worth the pain to wear them............

Oh, who am I kidding?

The problem is I asked opinions. Should I keep them or give them away? Then I started thinking again and this time I started thinking about me. The me that I was and the me that could be again??

I was always semi-snarky. It's one of my personality traits that I happen to love. I have no patience with my own stupidity let alone others. I'm never rude but in my head I've said all sorts of things that I wouldn't want coming out of my mouth. I'm one of those people that truly enjoy sarcasm; in all honesty, I'm fluent in it. I get frustrated with myself when I can't remember people, places and appointments and I still get impatient with others. Especially when I'm in pain. Pain doesn't turn off an on at designated times. I wish it could. The only thing I'm certain of anymore is when the humidity starts to rise.

So it's back to finding me. The me who loves to laugh. The me who loves the ocean and could think of nothing better than waking up to the sound of the waves. The me who loves the Roadrunner and Yosemite Sam. The me who loves to read and play on computers. The me who loves to go on road trips. The me that finds beauty in nature. The me that loves photography. The me that loves to cook and play in the kitchen. The me that loves movies and television, especially crime dramas. The me that would love to hold hands while walking and talking about absolutely nothing. The me that would love waking up next to my best friend. The me that also has a reclusive side. The me that is confident and self assured. The me that struggles with depression and pain. The me that has Fibromyalgia and doesn't want it to define my life. The me that still struggles with that concept. 

I know that many of us struggle with finding ourselves in the midst of the pain. Pain has blurred the knowledge of ourselves that we used to take for granted. I'm so glad that we can open up to each other with our joys and our fears. We have the cloak of this invisible illness that we wear around our shoulders that gives us a personality all its own. 

This illness wants to suck the life out of us.

And it's a battle every day not to let it do that.

My problem? 

Or one of them.......

I make stupid decisions when I'm in pain.

Oh well.......

I shouldn't look at my shoes.

THERMAL THERAPY..... OK, TAKE A HOT BATH

Now, I've read it all.

I don't know whether to laugh or cry.

We're back to mud.

I love going to the spa. It just feels good to get pampered every now and then. If we talk about now, I don't love massage anymore. Touch, especially touch that rearranges tender points, is not a good thing. 

It hurts like hell.

Now it seems that mud-bath therapy and balneotherapy (bath therapy) has hit the scientific pages regarding Fibromyalgia. For two weeks the subjects received "thermal therapy" (OK, a bath or a mud bath) for six days a week. 21 got a mud bath and 20 got a hot bath. Most of the patients reported a reduction in pain.

WELL, OF COURSE THEY DID.

Who hasn't felt better after a hot bath? My daughter has stories galore. Anything that went wrong.....get in the bath. As far as I'm concerned, a hot bath helps everything. You just feel better. I only see an eensie-weensie problem.

I can't live in the bathtub.

My goodness, who gets grants for this????

And, how can I get in on it?

There are studies about moderate drinking helping Fibromyalgia symptoms, now mud baths. Like I've said, if you're half lit of course you're not going to be in as much pain. There is the obligatory disclaimer about not drinking with certain medications, thank goodness. The same premise applies here. Who wouldn't feel better after a mud bath or a hot bath?

I find that when I get in the tub of swirling water at night it helps me relax. I take a muscle relaxer and take a good book, my diet coke and I light some aromatherapy candles and try to keep my muscles from going into painful spasms. It's one of those simple pleasures that, for just a few moments when I close my eyes, put me on a beautiful, verdant tropical island far away from the barren wasteland of Fibromyalgia. 

I love that part of the evening. There is one slight problem with a jetted tub and I cannot stress what I am about to tell you enough. Never, and let me say it once again, never put even a little bit of bubble bath in a jetted tub. Then after you've been dumb enough to do that, never lay back and close your eyes and surrender yourself to blissful meditation.  First of all, Philosophy's Amazing Grace bubble bath in your nostrils is vile. Second of all, it makes a TON of bubbles. It takes forever to get rid of the bubbles and the serenity of the bath will be replaced by the irritation of cleaning up bubbles.

OK, any followers that are doctors?? I have a wonderful idea for a study. We need to take 50 women who have Fibromyalgia. I'll leave the weeding out the candidates to the doctors. The control group will have a yummy, moist, chocolate filled, chocolate cake and the placebo group will receive edamame. The trick is to have each group watch each other eat. Then we report which group felt better after eating. (note: we do not weigh the control group after the study.) Let's name it "the chocolate cake hypothesis."

I think that would qualify as a scientific study.

When does common sense get into scientific publications?

Will insurance cover spa visits?

I do have so say one thing.

In some respects, I do like this study......