Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.
With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”
Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.
Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible
Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.
Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

Hectic Week - Lots going on... Dealing with Lupus Flares, Fatigue and Pain

There is lots out there I am putting on Face Book, along with on some of the sites where I belong and blog. It seems there are so many worthy places to find good information, great advocacy, lots of links where you can read the latest on so many illnesses, and what is being done to fight them, that I try to spend my time between those, and my own blog, my own writing, my book that I so want to desperately complete, and reading. It takes patience, and stamina to just post, especially when you are dealing with even typing making your body hurt. My right shoulder is just giving me fits. So, trying to sit here and type for any length of time is a nightmare. I was so hoping I would see some relief from the cervical injections, but I know those probably will not help my shoulder pain. About the only thing that is going to relief that is replacement surgery, plus now my pain specialist is recommending an implanted pain pump.  Yesterday, I did go through the cervical injections. I am hoping that it might help somewhat, but I have my doubts. The chronic pain has been with me now for so long, and my joints and discs seem to be falling apart more quickly, as the days pass. It truly sucks. It is hard not to want to belong to so many of the pages, groups, blogs and so forth on Face Book, and the other sites I have found. They all have lots of incredible people that are trying their best to do good, to help advocacy, to write, to support others, that it seems impossible not to belong. What I need to do I feel, is begin to take all of my posts, and make sure I keep them. Much of my own writing that could go into my book is right there in my daily posts online.

So, I am making myself a promise starting today. I am going to begin writing everything down in my journal that I post daily. I will try and go back and copy some of the things I have already written, and be sure I put them in the place I am writing for my book. I now realize that taking my posts and doing that would put me in the realms of having my book. I thought about calling it something like - The Dichotomy of Chronic Pain and Illness - Pieces of Me. Which would fit right in, through the daily chronicle of my living and learning about pain and chronic illness. For I am the bits and pieces of my own psyche, my own suffering, my own learning, posting, blogging. It is a daily look at what it is like to go through living with Lupus, RA, degenerative joint disease, the medications, the ups and downs, the flares, and how being online can makes a world of difference, where you can find support through groups, lots of others that become a part of your extended online family, where you find love and caring through others, where you learn more about your diseases, conditions and illnesses, where you find doctors, research, clinical trials, and those passionate about making life better. Without my own line friendships, there are days I would totally give up and give in to be content to sit on my butt, and say to hell with the world of pain. That would be the easiest thing to do. This month is Pain Awareness Month, it is also Invisible Illness Month, that goes right along with many of these illnesses. Those of us that fight these syndromes, illnesses, diseases, and the pain and suffrage that go along with them, can tell you we get to the point daily, we would like to "throw in the towel", but faith, hope, and the love of others keep us coming back to our computers to find people that keep us going, even in the darkest of times. When we can't sleep from pain, when we have endured yet another surgery, or a failed treatment, we come online and there they are, those that want to lift us up, give us hope that we have to smile to ourselves.
It gets me to thinking about all I write daily on these blogs, and groups. I learn so much from so many, I get lifted up when I am at the bottom of the barrel of despair. These people deserve a huge round of applause. They work daily to make life more bearable, even in their own illness and pain, they come to Face Book, to pain blogs, to Lupus blogs, to so many wonderful places online to support those who hurt also. I feel these wondrous people, are just like myself. They are Moms. Dads, patients, caretakers, professionals, novices, writers, poets, every day people, just trying to make a difference. We all want our own pain and suffering to go away. We all want to wake up one morning to read headlines that discoveries have been made for all of these nightmare illnesses and see that the puzzle, the mystery has been finally solved. We want to read some grand medication or therapy will just blow into our lives, and we will be cured for good. We don't want to give up or give into what hurts, but there are days, weeks, months, and even years, that feeling well is just not in our cards. So, we blather on, online about the great days, and the days that suck. We find hope in one post, or online through a news article. We score over the websites that tell us that a cure is near. Just like Benlysta. I have followed that one medication now for a couple of years. It has given me hope, that it will be the miracle of all medications, that it will be my cure all, for the Lupus Flares. Each day I mark off that approval from the FDA is just one more day closer. Yet, will it really be the end all to Lupus flares? The results of clinical trials are saying it is definitely worth trying. But, until it is out on the market, and every day Lupus patients begin to use it, we can only go by what the pharmaceutical companies, and their clinical trials gibberish tell us. Like myself, it is difficult to put your trust in what these companies tell us. After all, they are the ones that prosper if millions take the medication. They are the ones to get rich and benefit the most from us as patients. If the doctors press us, in desperation we are just about willing to try anything if it means we might not have flares, we may see pain relief. We will go to the ends of the galaxy, fly through the black holes of where ever we need to if we remotely feel we might find the final frontier of relief, through the many pills, injections, infusions, patches, and creams. We spend our time awaiting that clinical trial to say, this is the Holy Grail of making us well.

Confusion and Concerns - any suggestions?

We were planning a trip to Washington DC in October. But I have lots of concerns due to both of us and our health issues. I really need that pain pump done before the 1st of the year, due to my insurance situation. I may have to change insurance at the 1st of the year, and don't know how that might effect me. My pain, plus the Lupus etc is a huge concern for a trip of 10 days, and thousands of miles. But, I also feel he needs to get his stomach checked out. He has been having severe issues with nausea & even sometimes vomiting blood. He gets sick trying to eat. He does not have insurance so we need to get him into the clinic that can take care of this on a sliding fee scale. He has been there before, but he needs to redo paperwork, and it takes awhile to get an appt. & get the tests etc. He also has very bad pain that requires strong pain medication due to his lower back problem. We are worn out when we just take a day or overnight trip to Bossier or the casino in OK. He complains enough that I have to do some of the driving. And that is only a 2 or 3 hour trip & then back. I just don't see us driving 1300 miles one way, and not having major health issues. Plus, we have both of our dogs, that are so used to us, they get upset when we are gone a few hours. When I go into the hospital they lay around and won't eat or drink for days sometimes. We need to take them with us, but my Pug is very prone to motion sickness, and she hates riding. If we leave them, I fear our neighbor kid, even though they are good neighbors may not come in & take care of them, just due to the fact they get all hyped when any one comes in other than us. They jump, bark and just get nuts, because of being used to just him and I, and not really having much company. The little one is very protective & he nips sometimes until he is used to you. I fear the boy might not come around due to all of that & I would never forgive myself if something happened to either him or our puppies. Any one knows when you have a chronic illness or pain, there is lots to consider when taking an extended vacation of any kind. I just feel we should postpone the trip until spring. Save up more money, so we can rent a small motor home, take the dogs, and then we can have more room, I can get my pain pump installed, he can get his stomach looked into... and the trip would be much more pleasant. But, I knew if I even mentioned it, he would get upset. Well, I tried to say something yesterday, and sure enough, he got upset before I could even explain all of my concerns. Now, we are just "being civil" but not really talking. Which is not like us. I don't know what to say or do anymore. There is too much as stake with our health, our home, our lives, our animals etc. We need to have tires put on our car, and get the transmission checked. I just feel I should at least be able to voice my concerns. I realize he is looking forward to showing my DC an seeing his step-Mom, and she is all hyped up also. But, I feel my concerns are legitimate and postponing the trip would be better, and then we won't have such worries on our plate in a few months. I don't know what to do honestly.

The Virtual March Begins - American Pain Foundation

http://www.painfoundation.org/take-action/action-network/10000-voices.html

Please join me in lending your voice for the September Pain Awareness Month, and the virtual march. The URL above gives you all of the information you need. I thank you in advance for all of your support.

xoxoxo Rhia

A Positive Light for a Change in a rather darkened world right now...

It seems everywhere we turn something bad is going on. Whether it be more bad news about the war, its casualties, the economy, foreclosures, Wall Street, job losses, Mother's Natures Wrath, and a million other terrible catastrophes, from our local news to the internet, the bad stuff is all around. I like watching Brian Williams on the Nightly News, because they always end the program with something or someone "Making a Difference" for the good.

I was in Care 2 this morning and found this site. The gentleman is doing something out of the kindness of his heart for the good. I joined the site and thought you may like to also. The link is below:


http://itstartswith.us/about/index.html


The good things start with us. Once voice, one good deed, and it can snow ball quickly into something terrific.


I was happy when I saw the site, and rather than posting about something lousy again, I decided to share something spectacular!

Rhia