Temporary pause

as the laptop has finally given up on me. Today's screen went from half pink to twitching to finally being blank. Although if I tilt it a certain way, I can see the vague impression of the screen behind the veil of black, so I know it's just the screen. But in the five years I have had this computer it has had to be sent away for repairs three times and I've had to use the Geek Squad twice. The battery's been replaced twice as well (which is not all that unusual), but I've also gone through 4 power cords, which is ridiculous. I could have bought a new laptop (plus) with what I've spent repairing the old one, and since one sister has been nice enough to offer up her store credit and another sister her employee discount card, I should be able to afford to get what I need/would like. Thankfully, Mum got a netbook from her sister for Christmas, so I can still do some research about what I'm going to get. So if you're wondering about the little bit light-ish (and picture-less) posting, not to mention the severely restricted blog browsing, that's what's up. Hope your week is going OK.

"I wanted to run away that day. But you can't run away from your own feet."*

One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.

For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.

I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.


So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.

Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.


Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.

And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.

I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.

And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.

*Cloudy with a Chance of Meatballs

Randomosity, of which I am good at

(Part of me is saying "I don't want this blog to turn into a bunch of whiny posts about how sick I am, especially when it's not really that sick, it's just average sick (for me) and who cares about that?" and another part of me is saying "Well, you've got to write something and what the hell else do you have to talk about?" The parts of me are almost never in agreement about anything, so I find it's probably the best choice to let them bicker and try to move on. In that spirit:)

Here's a very brief bit of an update -

I have been sinus infection sick for over a month now (making this the 14th straight month in a row that I have had either a throat or sinus infection), and, after a consult with yet another ENT, they (once again) think I should have some surgery. Sinus repaired, cyst removed, tonsils out, deviated septum fixed. The surgery is still a ?, for a few reasons, but it seems more and more likely as time moves on. I have a lot of reservations, (including how do I take my very necessary meds after a tonsilectomy; how are we going to keep my BP stabilized during the surgery; which doesn't even mention the fact that "10 days" of recovery time for normal people usually winds up being an exponent of that number for me), but I'm working through them while I wait for the next step, which is a CAT scan. I will keep you posted: when I know more, you'll know more.

In other news, I am searching for a new laptop, as this one (at only 5 years old) has been gradually making things more and more difficult for me. This past week, it's decided that it doesn't want to recognize the back-up hard drive unless it's plugged into a certain USB port. There are three USB ports, and every time I turn the thing on, it requires that I change it to a different one. This is marginally frustrating, but when you combine it with the semi-pixelated screen (from when Humpty and I took a tumble nearly two years ago), the fact that the power cord only works if it is turned at a 35 degree angle, and the fact that I have now spent more in repairing the damn thing than I would on buying a new computer, I have decided that I am going to start searching for a replacement in earnest.

Since I don't like A) Spending Money I Don't Have, B) Change, and C)Buying Things I don't Know A Lot About, you might guess that I am not entirely psyched about this proposition. You would be correct. Any recommendations would be greatly appreciated - what do you all use, and how do you like it?

My favorite part about my current HP is that it came with a controller, so I can listen to music at night and not have to move, but that's not a requirement in the new computer, since I could always just use this guy as a very big IPOD.

I also know that

• it is school vacation week here, so we should have the kiddos at some point, probably for sleepovers;
  
• my dad is back at work after a week's vacation and I definitely have to be better by the time he retires because (Him + Free Time) + (Me + Not Being Able to Do Anything + Extreme Sensitivity to All Smells, Especially Cooking Oil) = Bad News;
• SisterS is supposed to come down this weekend with BabyB and Oldest Nephew (which reminds me that I need new blog names for Youngest Nephew and BabyB) which is pretty awesome; and
• we're supposed to have some sort of engagment party/dinner thing for SisterCh and her fiance on Sunday, which I would be more excited about if his family wasn't coming, because thing I really know about his family is that the last time they were over, his mother wanted to take a bath in our bathtub. Really. It was very awkward.

So that's my news, and I also hope to be back before too long with a picture post, see if I can't scrabble a Best Shot for this Monday, get back into the swing of things again.

The end of the world?

It has not been my Best Week Ever.

Of course, it also has not been my Worst Week Ever, so there's always that.

I have acquired yet another sinus infection, which came as a surprise to even me, since I was so busy recovering from Monday's poking and prodding ("Oh look: she's super hyper-reflexive today, let's see if she keeps doing that if we keep hitting with this little hammer!") by the doctors that I didn't even recognize all the build up to the infection until my fever was raging and I was (TMI Upcoming: skip if eating) gagging on the post-nasal drip. By Wednesday, I was pretty sure that my sinus cavities had been packed as fully as they possibly could be, and by yesterday, I was seriously wondering why we ever stopped drilling holes in people's heads as a cure for things. I'm sure it would've cured what ailed me, at any rate.

Today is a slightly different story - less of the throwing up, more of the actually being able to inhale without crying, which is all for the better, in my opinion. Aside from completely missing the trash barrel 9.8 out of 10 times I threw a tissue in that general direction, I have also been reading a lot this week. The books have all been some of my past favorites, comfort reads from my personal library, which is totally my modus operandi when I'm sick: Old friends are better friends when it hurts to open your eyes and you have to roll over every 4 minutes so that whatever has infiltrated your head can slowly drip into the other side of your face. (And that's the answer I've been looking for, the one I should give when clueless people ask me why I keep all these books - "It's because something needs to keep my mind off of the fact that my brain is leaking out of my nose, ears and eyeballs, and I don't see you volunteering!")

Anyways, halfway through my second Nora Roberts trilogy yesterday, I realized that the books I was reading all seemed to have something in common: Everything I was reading had to do with the end of the world... or better yet, preventing the end of the world. Demons, vampires, gods, goddesses, ancient alien beings, epic warfare and battles filled with love and loss, blood and sacrifice. And the stories of people who are called upon to fight, even knowing that they're outnumbered, that the enemy is probably a lot stronger than them, that they might lose everything and everyone they care about.

Nothing like the end of the world to make the fact that 2/3 of the areas you use for breathing no longer function correctly seem like a minor detail.

In case you're interested, I started with her Circle trilogy, read Part I of Stephen King's It (if not my most favorite book ever, it's definitely in the top 3), and then worked my way through Nora's Blood Brothers trilogy (which is very reminiscent, at least to me, of It). I was going to read the fabulous post-apocalyptic Life as we knew it by Susan Beth Pfieffer next, but I'm still waiting for a copy of the sequel, so I think I'll see if I can't find some other sort of literary mayhem that appeals to me.

"How does this finding change the world of Chronic Fatigue Syndrome?

Number 1: It ends the debate. CFS is not, and never was, a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this. And now, finally, those who have attempted to keep patients from receiving medical care for this disease know this. Number 2: This finding demands serious attention. Attention in the form of research funding. Just as our government has responded to the threat of HIV and other serious, emergent infectious agents, this finding demands significant and responsible action from our national health agencies. ... Patients deserve to know if they are infected, and to be offered effective treatments that will stop the progression of their disease. "

Annette Whittemore

This past October saw (as is, by now old news around the CFIDS niche of the blogosphere), the publication of a study in Science that linked a recently found retrovirus - XMRV - to Chronic Fatigue Syndrome, Fibromyalgia and various other "neuro-immune diseases." The link was as strong as 90-96% of the CFIDS affected patients vs 4% of control subjects testing positive for XMRV. According to the Whittemore Peterson Institute (principal investigators), "The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

Of course, the study sampling was small (only 200 patients), and it did not prove causality vs. comorbidity. Also, although the retrovirus was detected, the researchers are still unable to say what, exactly, the XMRV infection means to those who are infected, so there is still a lot of work left to be done, but what it does mean is that there could soon be blood tests available for XMRV, and that treatment trials - including those of many already known and funded anti-viral medications - could follow soon after.

For the most part, I'm going to try to keep this post from being too personal, since that's what transformed my other drafts from being 'just a tad too long' to being 'too long to post because no one will ever trudge through all of that.' However, I do have to note here that being able to type that sentence, to include the words "treatment trials" and know what they would mean for my life, and for the lives of so many fellow CFIDS sufferers: Well, I just can't explain the kind of hope that gives me.

To say that this is the first, real leap of hope I've had in regards to my medical conditions in at least 6 years is to downplay how important this news could be for me. I've talked before about laying in the MRI tube, with its infernal clanking and banging, shot up with radioactive dyes and praying that this time, they just Find. Something. Anything. Just to know - just to have the answer, know the steps to follow, just to have some clue. It's not an impulse I am proud of - that there have been times I would rather know I was dying than have to live with the not knowing - but the impulse has been there all the same.

"And so you can generate a hypothesis, much like the HIV hypothesis, is that you get an acute infection, you develop an antibody response, ultimately you have a failure of the immune system, and we postulate here that ultimately may be an NK cell numbers and function, resulting in very significant and prolonged disease. That is a model that could be fairly easily tested, and I think that that is something we should do rapidly and judiciously. "

Dr. Peterson, CFSAC committee meetings, 10/29 & 10/30

There's also no small measure of joy in knowing that I might be able to prove my illness to people - to have my experience validated, not just by those who know or love me, or just by those who suffer the same ways I have, or just by the rare doctor who 'believes' what I am saying - but by every damn body. So that I won't have to be afraid if I require a trip to the emergency room, knowing that I won't be met with distrust and derision, that I won't be sent home in tears, or told to wait for the psychologist to come down and see me: that I would be treated as a person who is sick and needs care should be treated.

There's a lot of talk now about invisible disabilities (at least in the online communities I frequent), and I think that that is awesome, because there needs to be a lot of discussion about one of the most marginalized groups in our society. But something I think that often gets overlooked, is that within the medical profession, there is too often a divide between how they treat what they can see - even if it means that it's only visible in a blood test or a CAT scan - and what they can't - for example, things like chronic pain or mental illnesses. Even though I know that no proof should be required, I also know that in the real world, it still is.


Witness the ableism in this excerpt that justifies my experience even as it nullifies someone else's - From Reno Gazette Journal: "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said." At the exact same time that the XMRV findings were being released, I also came across these two pieces of research - The first was that the at a meeting of the "2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms." And the second is a study out of the Netherlands that discusses two commonly used "therapies" for CFIDS/ME - Cognitive Behavior Therapy and Graded Exercise Therapy - and concludes that "it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET." And yet, those are still recommended by the CDC and widely used as "treatments" - almost exclusively in some countries.

These are the attitudes patients have to contend with, in the real world - to be GRATEFUL that you are living with a deadly retrovirus, because otherwise people might not take you seriously; to know that any doctor you might go to could just tell you he doesn't "believe" in what you have; to get recommendations for treatments that are not only unproven, but incredible dangerous and potentially lethal - and to have no alternative treatments available to you.

As far as I am concerned, the least that has happened here is that this development has renewed the interest of scientists into these diseases that have gone too long ignored. Drug companies go where they know they can make money, and with the CDC estimating that CFS alone "affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," there is certainly profit to be made. From Medical News Today, November 09: "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man."

"Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH. Dr William Schaffner, professor of infectious diseases at Vanderbilt University in Nashville, Tennessee, told the New York Times this was an exciting discovery that made sense and he suspects it will lead to an "avalanche of subsequent studies".

ME Action, Nov 09.

"Judy Mikovits, the lead researcher in the study, said their findings also are being taken seriously by the rest of the scientific community."I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."

Reno Gazette Journal, (Nov 09)

“Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably high...If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown”

Science Express, Oct. 09.


So that's an overview of the XMRV findings, from my perspective: It's something to be cautiously hopeful about. I have a bunch of other quotes and thoughts to share, on a day when I can write more, but for today, I just wanted to leave you with this:

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough."

Hillary Johnson, "A Case of Chronic Denial" , NY Times, 10-21-09