Sunday, September 13, 2009

Are You Blogging for the Cause?

Are You Blogging for the Cause?

This post may sound much like my opening post, but I have created this post to link to the web-site to promote Invisible Chronic Illness Awareness week and the 5 day free virtual conferences with 20 speakers, which runs September 14 - 18, 2009. To learn more, go to thank you for your support.

My name is Laurie. I am a 46 year old mother of 4 children and 3 cats. I have Fibromyalgia. One of the most mis-understood illnesses that I am aware of. Many people will even argue that it isn't even real, including some doctors. This can be very frustrating at times. Those of us with an invisible illness such as fibromyalgia often hear people saying things like..."You don't look sick"..."You must have a low pain threshold"..."Why can' you just take some tylenol or ibuprofen and push through it", just to name a few.
When we do come across someone who has heard of fibromyalgia, they try to be understanding, but most people think that fibromyalgia is just chronic muscle pain. It's much more than that. This is the reason I my blog URL is titled "fibromyalgia-morethanapain". It's much more.
Fibromyalgia, like many other illnesses comes in varying degrees. Some people have a mild form that consists mostly of deep muscle pain, and a sense of just not feeling well. These people can usually push through it, and are successful with some of the current treatments. I have found, that this is usually the case early on in the illness. Others, like myself have a more debilitating case of the illness. I have progressively gotten worse over time. I finally had to give up my career and go on disability, which is difficult.

Many, like myself, also suffer from many other symptoms and illnesses that come along with fibro.Of course, deep muscle pain, migrain headaches, insomnia, sleep apnea, restless leg syndrome (RLS), depression, anxiety, nausea, gastroesophageal reflux disease (GERD), irritable bowel syndrome (IBS), constipation (side effect of many pain medications) weight gain (from fibro and a side effect of some medications) hot flashes and profuse sweating alternating with episodes of chills that feel like they go down to the bone, increased sensory perception (a heightened sense of light, sound, and smell which can be very annoying), sensitivity to changes in the weather, gradually losing independence by needing medical aids such as canes, leg braces, shower seats, inability to get in and out of tub by yourself, loss of balance, short term memory loss, decreased cognitive skills, tremors, a sense of "just not feeling well", like you have the flu without the fever. Some people can't even bare to have fabrics touch their skin. The sheets on their beds hurt them and their clothes hurt their skin. I am sure I have left something out, or there are other problems that people suffer from that I am not aware of yet.

As you can see, this illness goes much further than the general public are aware of. Many people have been mis-led by the commercials that the pharmaceutical companies air. They show a generally happy, vibrant looking person, complaining of muscle aches, and then telling us that they were successfully treated with whatever drug they are tryng to push. This makes our cause, trying to raise awareness of this illness, that much harder. Yes, the symptoms of fibromyalgia can be treated in some people, but most still suffer from many of the problems that I have listed above. The best thing any of us can do for ourselves is research. Search the internet, medical journals, and talk thoroughly with a physician that is trained to treat fibromyalgia or whatever invisible illness you or someone you know suffers from. Be your own advocate. It is your body, and you must demand proper medical care, and take a pro-active stance in your own treatment. No one knows exactly how bad you feel as well as you do. We know our own bodies better than anyone else does. If you are recieving treatment, and you feel it is not working, research alternative treatments and discuss your options with a qualified medical professional.

How do I deal with my invisible illness? I maintain HOPE. I research my illness and treatments for it. I print out the information I find and take it to my doctor to review with me. I follow my treatment plan religiously. And, on the days that I feel that I just can't handle one more second of the pain and the sense of just not feeling well, I pray. I pray and ask God what he wants me to do with my invisible disease. Why do I have it and what is my purpose? I believe it is to help others to understand and find hope.

Please, if you are reading this, and you know someone with an invisible illness, do them a favor and research their disease, learn what you can do to help them and make their lives a little easier. Help them by understanding and lending them an ear that will listen, and a heart that will care. It would mean the world to them.
Soft Fibro Hugs to all.
Laurie D.


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