Dawn Rising

Well. Things have calmed down again. Glad that's out of my system. I wish I wasn't so emotional, but genetics are not in my favor. I know, I was born sensitive and emotional. I could manage it a lot better when things were a bit more stable, optimally, when I was truly happy, which was a very short period of time...I still hope as things get better I can control the urge to last out when I'm hurt and handle things far more gracefully. Another thing that frustrates me about the effects of chronic illness on my life. Being a better person has always been on my list of life philosophies since I was a teen though, so I have hopes I will recover the progress I've lost ground on the last 10 years of isolation and difficulty.

I see the light growing on the horizon as if it were a new day, slowly, but surely dawning, and I am so grateful for where I am now, and where I see myself going.

I am so grateful! I found a lovely roommate, a young woman from Europe, transferring for work to be near her long-distance boyfriend, a young aspiring filmmaker who gave off a very good vibe, and I am relieved and excited to be sharing my place with her. I know it's just an apartment, but I love it. It's the first time I've actually gotten to furnish my own home to my liking, and I've been told it's very cozy. (I wouldn't say it's an interior design masterpiece, not by far, but it's comfortable, up to date, and it's all mine!)

Now, I never thought I'd have to have a roommate at this age, but then, I've had to scrap most of my plans and pre-conceived notions of how my life should be, and it's a hell of a lot better a place than I was at a year ago. (Well, literally AND figuratively speaking, cuz I was homeless this time last year, sleeping on the couch, and this place looks and feels completely different now!)

I've put my persistent wanderlust on hold for now...Because seriously, with my health issues, it was a little delusional...PLUS, I finally realized, I live in a place many people in the world would and do envy...I'm blessed to be a 5 minute drive from the Los Angeles Beach Cities, my beloved Golden Coast, and the cliffs and amazing vistas of the Palos Verdes Peninsula, close enough for me to cruise up to without getting too tired... I made myself wake up from dreams of exotic islands with not as ideal weather and reminded myself how much there is to explore and do here, so why the heck would I want to put myself through a move or a plane ride and the stresses of travel? Yes, I think my feet are landing back on the ground. These last several months have been therapeutic, because I've caught myself lately completely forgetting my life is at all "abnormal"... I feel like a "real" person again, a regular Jane...It don't feel so much shame or beat myself up so much over what I can't do, and although if I stop to think, I know the reality is that each day IS a struggle from the time I get up, it's so normal to me now, that I hardly notice, unless it's a really, really bad day. I think I'm getting my social skills back, too, although my brain has been a bit scrambled lately, and I still find myself forgetting some of the niceties and tact that used to be second nature to me...

I've found a new lead on wellness, that I'd temporarily overlooked/half forgotten... Cleansing and Detox... Including Juicing, and discovered Colon Hydrotherapy. Great stuff. Hopefully I can stay focused on that, and continue to get grounded and incorporate more of what I want to help me...Meditation, Yoga, and my biggest, scariest, most exciting dream, writing...then when I have that down, maybe on to try dating once again, eek! That will be the biggest challenge of all, because no matter how "normal" I feel, that will have the potential to make me face my limitations in a very big way...But I have hope in my heart that the mysteries of fate have to give me a break and life will suddenly begin to come together...and move forward, and I find myself excited to see what happens next...

XMRV and XAND - Are We Jumping the Gun?

Well, well, well. As you probably all know, earlier this month, it was announced that a new virus has been found in a large percentage of the CFS population. It has been named XMRV, for Xenotropic Murine leukemia Virus-related virus and "is one of three infectious retroviruses known to infect humans." (For more info see: http://www.codiagnostics.com/XMRV/faq.php )

Okay, so I can see why that is a big deal. CFS being linked to a virus of the same sort that causes AIDS, a retrovirus. Granted, that is news. But how big is it? And what does it mean?

In the past 24 hours it has been announced that there is now a test available for XMRV.

It costs a mere $399.00 US, and is not likely to be covered by insurance. Still, very exciting, right?

Well, I thought so, but after reading all the FAQ on Cooperative Diagnostics website (see link above) I have to ask, "Why?"

It seems to me that getting that test now would be nothing but a waste of money. Why?
Well there are a few reasons.

First, XMRV has NOT been proven to be the cause of CFS. The same thing has been presumed to be true in the past for Enteroviruses, Cytomegalovirus, HHV6, and Epstein Barr.

This makes me feel like the CFS community is being exploited, yet again, with hopes for not just with the hope of a surefire, scientifically proven diagnostic test, but a cure, even though the FAQs on Cooperative Diagnostic's website is careful to cover their backs, the propaganda they are building around all this seems aimed at toying with the vulnerabilities of a group of very sick people looking for a shred of hope to hang onto, despite the number of disappointments and dead ends of the past 20 years.

I'm not saying that the XMRV is absolutely NOT that hope, but I do believe that it is far too early to be dangling the type of promise that the researchers seem to be holding out at the moment.

I know this all too well, personally. I was very excited when I first read the news. And, ironically, the specialist who is treating me for CFS had just prescribed me an AIDS/Hepatitis medication. To my chagrin, it is not covered by my insurance...I searched for programs to reduce the price, and as I have in the past, discovered once again that if you have AIDS in this country, you will be taken care of. There are all kinds of organizations, some even government subsidized to take care of anything an AIDS patient could need, from medication, to food, and housing. That's right. I discovered that if I were an AIDS patient, I'd be so much better off than what I am, as a CFS patient. Therefore it came as just validation when I came across the NY Times article where Dr. Nancy Klimas states that if she had to choose, she would choose to be an AIDS patient over a CFS patient. (http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2)

It is one thing for this group of researchers to release this information, or rather, release information about the potential of the research they are doing, but quite another for the lab to release a test. To me, releasing a test that does nothing but prove someone has a virus that may only hypothetically cause CFS is as bad as any of the quacks out there selling their protocols, herbs, and "promising" treatments to the desperate masses with illnesses such as CFS and Fibromyalgia. Especially at $399! Why would anyone thinking logically shell out so much money for a test that is not going to help them in the least, at least, not at that moment?!? The only reason I can think of, is what I've already mentioned. That their emotions have overtaken logic, because their weaknesses are being played upon by yet another money-making entity disguised as a helping hand. (I mean, come on, they've gone ahead and created a whole new name for a group of diseases,[XAND] just on the basis of this research? Am I missing something?)

So I don't mean to be a killjoy, but I'd like to remind everyone to exercise caution, and not get their hopes up -- just yet. Yes, this could be big. It could mean that it will be accepted that we have a serious illness caused by virus of the same caliber as the one that causes AIDS, and that very soon all our suffering and struggle will be validated and there will be a definitive, widely accepted and scientifically indisputable way to prove we are as sick as we have been saying all these years. People will take us seriously, we won't have to defend ourselves against doubt, Disability Insurance will be granted to those who need it without having to jump through years of bureaucratic hoops, and best of all, people will start to care, and research will move forward to find a solution for us to take back our lives, if not be cured. OR it could prove to be just another opportunistic infection, one more medication to take, one more hope dashed.

As for me, I'm not losing hope, but I'll not be taken advantage of again or have my hopes raised until they should be.

The Journey

I was thinking...it feels like a lot of my posts are coming off as a bit angst-ridden.
Well, writing honestly about Fibro tends to bring that out I guess. It's hard having an invisible, unpredictable illness that no one gets, and that has wreaked havoc on your life. But this blog is supposed to be about The Journey WITH the illness. Life, as a whole. And the freedom to be honest about the role FM/ME play in it. But not just about IT. There's more to it than that. More than the struggle.

I guess I'm afraid of coming off as pessimistic. That's not me. Things have been tough recently. I thought having a place to live in peace would make everything okay. But it turns out, besides leaving behind a life that took me a lot of effort and time to build, for the first time in a couple of years, I wasn't so busy trying to survive that I could ignore things undealt with, turns out they were just lying there, beneath the surface, waiting, and once I had a chance to rest, there they were. Actually, I think survival became my thing, and not having to drive myself so hard sounded great, but in reality, you get used to things, even hard things. Without having to or being able to do that, it was like getting sick and starting the grieving process all over again.

I'm not where I planned to be in life. I can't even pretend, like I did before I moved, that I have things under control. (The truth was, it was a shakily constructed facade, mostly for other people's benefit.) Things have been dark lately, but there are hours, sometimes days, where I again see the light and the world is good and full of promise and hope.
So hopefully, that will show through a little more in the future :)