I began writing a post yesterday morning, and it had a very different tone then the one I am writing now. I am glad that I ran out of steam before I finished it, and published the blog. The constant pain from a fractured sacrum, lack of sleep, and what seemed like doctors who were unwilling to treat me came crashing down around me in one wave of Pity Party Central. Not that the pity party wasn't well deserved, but it also wasn't "me". Somewhere along the line of pain and lack of sleep, coupled with...ah yes, high dose steroids, I lost what is intrinsic to my personality, and that is HOPE.
Sometimes that hope is just a glimmer I can see off in the distance, but it is always there somewhere. Thankfully, after yet another discussion with my rheumatologist, that glimmer of hope came back.
So, tonight, despite the ice-pick pain in my hip from my sacral fractrure (due to long term prednisone use or from the last immune suppressant I was on...and am now off), lack of sleep (insomnia from the high dose steroids I am unable to lower until I start my new glimmer of hope...Benlysta), and the fact that I have NO idea if my insurance will approve this very expensive, new, infusion....I have some hope.
Some people may wonder how, after trying so many medications, and I have tried every pill/liquid on the market for lupus, I can still have hope that something will work. For me, that answer is simple....I am not the only one with lupus/autonomic dysfunction, therefore, there has to be a way to treat the underlying illness. There are always new treatments becoming available, and ones that treat similiar illnesses that might work, if this one does not.
I am only 33 years old....I am way too young to give up and curl into ball, even if I have to give my body a break every now and then to let it heal (like now with the fracture). That is not me giving up or even going into survival mode (though I don't think anyone would blame me if I did)...it is making sure my body heals itself in the most effective way possible, and as ordered by my doctors.
As I heal from fractures, my hope slowly being restored, my wish is that this glimmer will turn into something as bright as the sun so my whole family can feel the effects. This is not just MY illness...but their's as well. We have all felt the downturn in my mood, so here is yet another HOPE, that we all feel the uptick in my mood, as well!
Hi there just noticed this posted on Twitter and popped by to read. I haven't read all your blog posts but enough to note that you have several systems affected and that you have not responded as well to the usual medications as would be expected.
ReplyDeleteI have been reading Dr Horowitz book 'Why an i still sick' - it is written by a doctor who specialises in treating Lyme Disease but in reality during his many years he has also become expert at many other co infections and conditions that go hand in hand with Lyme disease and other chronic diseases. I recommend you have a good read and will post a link to a blog post I did. There is a huge controversy about Lyme Disease - Internationally, and many people get diagnosed with many other illnesses often auto immune including Lupus and all the other symptoms I read you struggle with including Autonomic dysfunction so don't expect your hospital doctors to be clued up about Chronic lyme as they have been mislead by the restricted and outdated guidelines from the IDSA that are vehemently opposed by a growing body of patients and patient advocates. There is a link to the first chapter of Dr Horowitz book through St Martin's press at the bottom of my post http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html note that Lyme is a clinical diagnosis as the tests are unreliable