Wednesday, September 8, 2010

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.

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