...and the verdict is...

...not in yet. Sigh. But, the thing is DONE!

The lawyer said it went as well as it could have gone, so that's encouraging. The judge said he believed Terri's testimony, and I think that after all is said and done they proved that Terri cannot work a 40-hour week, which is what we were there to prove. I did not have to testify, as the judge felt he had enough information without my additional testimony (which the lawyer interpreted as a good sign). So... although we did not get a ruling today, we feel fairly optimistic that Terri will receive a favorable ruling and get her full benefits.

We'll know anywhere from a week to 90 days; we'll get the results in the mail. Kinda frustrating, but at least it seems that things went well and it's DONE! Terri's sisters were there for support and overall, it went as well as we could have hoped.

So, keep those good thoughts coming and I'll let you know when we finally DO hear. :)

Counting Down

Well, we've got two days to go until the SSDI hearing on Tuesday morning. I have a pretty good feeling about it, but we could use all the help we could get, so if you have a minute and wouldn't mind sending some good thoughts our way for Tuesday morning, we'd appreciate it!

All the paperwork is filed, so all there is to do now is sit around and try not to be nervous. Ha!

I sincerely feel for anyone who has to go through this process. It completely, totally sucks to have to document all the things that you or your loved one can't do anymore, and to go over the entire awful story in detail, and then have someone judge whether or not you are really that disabled (or, presumably, just trying to "mooch off the system.") It's terrible. I will be so glad when it's over.

I'm actually doing pretty well. I'm tired, of course, and worried, but I really *do* have a good feeling, so I'm assuming that means the Universe is telling me that it will be fine and we'll have a favorable outcome. I really hope so. This is so important on so many levels. The income will help, of course, and then we'll be able to afford the $5500 OUT-OF-POCKET treatment that Terri needs (which is a bargain compared to the $20,000 it *could* cost if we went to Panama for it, which we won't be doing... yet). But it will really help Terri feel like she's contributing to our household, which is essential for someone who is such a 'do-er' as she is. Also, it would be very nice for me to have a little less pressure to keep working so much all the time. There is a lot at stake.

In preparation, we are spending today and tomorrow pretty much in bed. Of course I have work to do, but I'm doing it while resting in bed. We're having crazy stormy weather, so at least that's an excellent excuse to turn up the little heater, snuggle under the covers, put on a dumb movie and have some tea while getting my work done.

That's about it. We'll be single-mindedly trying to keep a lid on the anxiety and be thinking good thoughts. I will report back on Tuesday! With excellent, celebratory news, I'm sure.

lawyers, doctors, and politicians

(and pretty green and white foliage)

Today was a very long day.

We got up early (early for Terri is 9 am -- it's hard for her to even function before 11) and got ready to go see Terri's SSDI lawyer. Her hearing is April 13th, so it's getting close. I got to meet the lawyer for the first time; I liked him a lot. The meeting wasn't exactly fun: we were prepping for the hearing, so Steve (the lawyer) wanted to go over everything. Which meant telling him (again -- for his final notes) everything about how the CFS has affected Terri. Which was hard. It wasn't very fun for everyone to examine in detail, with specific examples, how Terri went from being a star Ph.D student, highly-valued employee and much-loved therapist to being bed-ridden for up to 20 hours per day. It was hard not to cry, but we kept it together. I think he feels pretty good about the hearing, which is good. If she doesn't get approved, I will be beyond pissed, is all I can say.

Then, because we ARE waiting for SSDI and currently doing all this on my income, it was time for Job #2: checking on critters. I actually love my pet business and want to keep it no matter what happens. (Saturday I did Job #3, babysitting. Later this week I will continue working on Job #4, freelance design.) So we checked on some kitties and then checked on some doggies, which was actually pretty fun. Terri LOVES dogs, so she got lots of hugs and kisses from furry friends, and that was a good part in the day.

Then it was off to the doctor, to check on Terri's toes. AGAIN. Yes, the same toes which have been giving her problems for, oh, two years now? So. Back to the doctor.

Then it was 3 pm and time to go home. All I have to say about the health care reform passage is how thankful I am that at least I should soon be able to stop worrying about Terri getting dropped from health insurance if -- God forbid -- somehow I lose our insurance coverage. Her condition is frustrating and expensive for doctors and insurance companies and I'm sure they'd love to drop her like a hot potato. Regardless of whatever kinks need to be worked out, that is a huge relief for me. I pray those people we elected can make it work the way we all hope it can.

I just finished reading PUSH (the book Precious is based upon). I don't know what I think yet. It was not exactly cheerful. It was good, for sure. I can't say whether I "liked" or "enjoyed" it, because it's not the sort of thing you really "enjoy." But it was affecting and worth reading. More about that later.

So, it's the end of the day, and we are both exhausted. My stomach is upset because it's that time of the month and because I can't stomach the brownies which I was craving and made (cruel irony), and we are both worn out from all of this.

Mr. Lawyer: please do your job well.
Mr. Doctor: please take good care of my sweetie's toes.
Mr. and Ms. Politicians: we are the people you are working for. Please do right by us.

With that, it's time for flipping through magazines and resting in preparation for Job #1 (full-time corporate job, which thankfully I do happen to love). Sometimes I wonder why I'm not going like gangbusters on my painting or other endeavors, and then we have a day like today and I remember: oh yeah, it's because I am working my butt off already.

However - and I say this from the bottom of my heart - I do it with a heart full of love for this sweet darling person who makes me so happy to come home to her. This funny, caring, kind and supportive girl who tries to clean the house so I don't have to, who spends all day every day trying to figure out the puzzle of how to get well, how to have a life, how to make my life easier. We have to prove to the SSDI folks how sick and disabled she is, which just goes against every fiber of my being, as I see all the good things she is and all the good things she does.

With that, I think there is a Better Homes and Gardens with my name on it calling to me.

Foggy

Oh, hi there blog! Wow, where have I been?

Oh yeah, on vacation, and then at work, and then it's been a weird weekend, and here we are and it's Monday and I'm totally out of the loop.

Friday was weird. I woke up with giant puffy, swollen eyes. I have never in my life had eyes that swollen -- I couldn't even see to drive. I was a little freaked out. In retrospect, it's probably not that big of a deal, but at the time, I could not imagine what had happened and I was a little (a little?) anxious about it. After a few hours I realized that I had tried a new eye makeup color the previous day, as well as had two immunizations in the last two weeks, so my body just freaked out a little. I've never had any sensitivity to eye makeup before, so hopefully it's just the grand confluence of immunizations, a new color, oh and getting my period as well. I would be very sad to have to completely start over with hypoallergenic eyemakeup, or egads, no makeup at all!! Noooo! I will wait another week before trying anything, just to be safe.

We did get a good space heater, and put it in the kitchen. Although it takes a little bit of time to warm it up, it's nice to have the kitchen brought up to a decent temperature, you know, like 60. I'm waiting for the temp to reach 65 -- won't that be a grand day? It doesn't exactly warm up the rest of the house, but it's nice to not freeze when you need to get a snack. If we are still here next year, I think we're going to invest in an Eden heater.

On that note, went to a first-time homebuyer's seminar on Saturday. Very, very encouraging and inspiring. We're going to move forward with getting all of our ducks in a row, knowing that we'd like to buy this fall (for a number of reasons) but wanting to get the process started now. I feel like we have a very short window of opportunity here in the Bay Area and I don't want to lose it. So that was exciting.

However most of the last few days have been extremely foggy (in my head). I was already tired from my trip, and then having the allergy reaction (and all the subsequent antihistamines, which I am very sensitive to) tired me out, and then I got my period, and basically I have no idea of anything going on around me at all. What? We need groceries? What? I should do some laundry? What? I was supposed to meet a friend for a walk this morning and completely slept through it?

Sigh. Some days (weeks?) are like that.

I have two books which I hope to finish today and tomorrow, so book reviews coming soon, but mostly I've been completely out of it. I hope to wake up this week! How are you all?

Catching A Break

Woohoo!

Terri just got word that she's going to be part of an XMRV study through her doctor's office. Which means that she will get the $650 test for $25. Yes!! That is $625 we don't have to cough up for a blood test now. What a freaking relief. I am so thrilled.

We'll head up to Santa Rosa next Monday so she can get the test taken and pick up the paperwork, etc. I am so happy because she really needs this test and we really needed to NOT spend that money.

All the little breaks count. I am jubilantly celebrating this one! Yippee!

Excellent Video Re: The XMRV Virus and CFS

This is a great, level-headed and easy-to-understand video about what the discovery of the xmrv virus means in regards to CFS. I keep having trouble with it at around the 4.15 mark, but hopefully it will play. Originally posted at http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv. Maybe it's just my computer -- it plays fine on Terri's... the end is especially moving. She says, "to all those who are close to giving up with this illness, this is the WRONG time to give up, this is absolutely the wrong time to give up. Have a party! Celebrate! Make it a fundraiser!"


Find more videos like this on ME-CFSCommunity.com

Anyway, good information and reminders not to get ahead of ourselves, but still a wonderful message of hope. Share this with others if you know anyone with CFS or Fibro!

Poor Terri has been doing so much studying and research on this that she's having a bit of a crash. She said tonight that part of what's so hard about this particular moment is that "so close, yet so far" feeling... however, I think there's lots of reasons to hang in there. We're hanging in there and thanking the small dedicated group of scientists who haven't given up! Very interested to see what comes next... we might have a holiday fundraiser party to help donate to research!

Health Update: Good News?

Yesterday Terri emailed me to tell me about a new link just announced between chronic fatigue syndrome and the XMRV retrovirus.

The journal Science published this very interesting article detailing the recent discovery that 67% of people who have severe chronic fatigue syndrome have this virus, as compared to 4% of the general population.

That's not saying that this is for sure the cause, or what role it has to play, but the fact that Science, NPR, the Wall Street Journal, the New York Times, etc., are all reporting on this discovery, means it is pretty big news. I never see articles about CFS anywhere, so it's pretty cool to suddenly see all this information out there. The Wall Street Journal article is particularly interesting and informative.

Researchers are already investigating whether current anti-retrovirus medications could be used, and comparing this to the discovery of the HIV virus and subsequent HIV/AIDS-suppressing drugs. XMRV is a retrovirus like HIV, which means that it knits itself into the DNA of a person -- so you have this virus forever. However, the huge amount of research and progress done with AIDS could be a big help in figuring out how to develop similar virus-suppressing drugs, if this virus is proven to be a major part in chronic fatigue syndrome.

I am cautiously optimistic and hopeful -- I'll get really excited if they show that medications aimed at the retrovirus get good results. Terri is going to be contacting her doctors with this article to see what they think, and if we can try anything immediately. She has classic chronic fatigue syndrome, which appears to be viral-induced. So I would think that she's a good candidate for treatment. I am wondering if she can apply for clinical trials, etc.

So we are going to be closely watching this development. It's possibly very exciting. If you know anyone with chronic fatigue syndrome or fibromyalgia, direct them to the Science or Wall Street Journal articles. If you have trouble reading the WSJ article, the full text is available on this forum.

Oops

Oh well. I meant to post yesterday, but then we got home later than I anticipated, and then I made breakfast for dinner which took a lot longer than I thought it would, and then... well, I totally forgot.

But we had a nice day yesterday. Terri has so much more improvement this year over last year. Last year we were celebrating being able to go to downtown Oakland and walk around for an hour or two. Yesterday we drove all over Oakland and Berkeley, went to Target (impossible last year), went to CostCo (unthinkable last year) and sat at Point Isabel (the big beautiful dog park right on the bay) to watch doggies. All this after a long week of vacation fun. It's pretty amazing. I am feeling so grateful for these improvements. It's not much month to month, but when I look back over the past year, she's definitely having more stamina and energy. Yay!!

Last night we got into a big giggle-fest. You know the kind where you can't stop giggling? We were doing that in the kitchen at 10 pm. Uncontrollable fits of giggling. This girl is a keeper. What a cutie.

There are four more days of vacation left, including today. Terri is looking up live music events and seasonal festivals, to see if we'd like to go to any this weekend. It's Hardly Strictly Bluegrass over in the city, which we'd love to go to, but that would be pushing our luck just a bit too much. Too difficult to park, too much walking, too many people. But maybe next year. However, this year, perhaps something in Oakland, East Bay Symphony or a visit to an art gallery. Or a pumpkin-fest. We could manage that.

She still has bad days (really bad days) but the fact that we've gone out for at least three big long shopping-wandering-driving trips this week, plus a walk in the woods, is something pretty terrific. I'm feeling very hopeful and happy.

Being on vacation is awesome.

Important Healthcare "Meme"

I got this one from Stefanie, who got it from Emily.

"This is so important to pass on that I'm tagging everyone who reads my blog to please post it on yours and encourage your readers to do the same (especially those of you who have a huge readership, which I don't), and if you can relate a personal anecdote that highlights how horrible the current system is (one that touched/is touching you or someone you love), all the better. "

So here's my story.

I never gave health insurance much thought. I've always been very lucky to be healthy. I've gone without it at times in my life, but have never had any bad experiences (thankfully). All that changed when my partner got diagnosed with severe Chronic Fatigue Syndrome. This illness, misunderstood and often not taken seriously, has decimated her life. You can read about it on her blog. This has been the hardest thing in my life -- to watch her suffer and to be unable to do anything about it. So, the intial diagnoses was a hard blow. And then we started getting pushback from the insurance company. No, they wouldn't pay for this drug. No, they wouldn't pay for that treatment. And no, they certainly wouldn't pay for one of the few doctors who knows anything about this disease. They wouldn't pay for acupuncture, massage, or any treatments which are shown to help ease symptoms.

So as soon as I could, I switched insurance to the fanciest option available to me at work, a PPO. I enrolled in the Flexible Spending Plan (putting money aside for healthcare not covered by insurance). This helped some. Of course, her CFS doctor still isn't covered by my insurance, and the crazy-expensive drug treatments aren't covered. But some other treatments ARE covered, and we have access to better regular doctors to treat all the myriad side-symptoms of her disease (neurological, gastrointestinal, circulatory, etc.). So that's good. And once we spend $1000 on out-of-network doctors and treatments (the bulk of her treatments), we can start to send in our bills to get partial payment on those bills. Still. That's after $1000.

However, she is unable to work because of this illness. If California did not have legal domestic partnership laws, and if I didn't have access to insurance, she would not have any treatment options at all. That thought scares me to death. She would be unable to see ANY doctor, as she has no income. (and the Social Security Disability system is another topic altogether...)

As it is, because the Federal Government still discriminates against LGBT people, I can't turn in receipts for her care to my Flexible Spending Plan, because it's a federal program. I can turn in receipts for myself, or any receipts which have my name on it, but all those hundreds of dollars spent on doctors visits, treatments, supplements -- which I would be reimbursed for if I had a husband, not a partner -- as far as the federal government is concerned, she's nobody to me.

I'm extremely grateful for my insurance, and for my job. In so many ways, we are incredibly lucky. But all that could change with one shift in the wind, with any number of small things going wrong. If she becomes uninsured, it could be nearly impossible for her to become re-insured because of this pre-existing (expensive) condition. I don't know what our options would be. I don't make a fortune by any means, but I am thrifty and frugal and we've been okay so far. But it worries me, being the sole breadwinner, with so much riding on me having a job.

I don't care who comes up with the plan to fix all this. It just needs to be fixed. My partner, my mother, my out-of-work friends -- should have an affordable, quality option. Nobody should be punished because they can't afford decent health insurance.

Affordable, quality healthcare in 2009 should be within the reach of everyone in the United States (and the world, but that's another argument). It is a crime that it is not. This is not a political issue. It's a moral issue and it's a very important issue to me since it directly affects my life partner and other people that I love. I don't care what the solution is, and I don't care who comes up with it. I think the government has too much to say about too many parts of our personal lives, but I'd welcome a government-sponsored option if it was affordable and if it meant that my partner would not have to be without care if something happened to me. I'd welcome ANY option which meant people would be able to get quality care if they become ill, with ANY disease or condition.

My top peeves are hypocrisy, bigotry, and NIMBYism... which is why I'm trying to keep an open mind. I am trying not to say anything bad or disrespectful about the folks who are obviously very worried about this healthcare issue for all the myriad reasons but maybe are expressing their fears in a not-very-productive way. So I maintain -- if you don't like what's on the table, come up with something better. Please. We need it.

Grateful Wednesday

..because anytime is a good time to be grateful!

I'm grateful that...

1. Terri is finally get a ton of overdue lab tests. You would not believe how difficult it is to get simple tests done once you have a diagnosis of something that no one knows anything about. Interestingly (maybe) the new doc 'doesn't believe in CFS' so is going to test for everything else under the sun. I think this is good, because maybe some other smaller things will come up which are treatable, which will all feed into recovery. This, balanced with her other doctor (for whom we pay out-of-pocket), is a good mix, I think. I hope.

2. For Terri's increased stamina, which has allowed us to go to some fun events recently and spend time out at the lake (where the photo above was taken). Don't you love silver hair? I do. She's had silver hair for years and years. I think it's gorgeous. Anyway, we've been able to do fun things lately and are inspired to go see more live music, so that's fun. I can't wait for our next adventure.

3. For my kitty's continued adorableness. She has a big owie under her leg where the tumor is, but she is still super-snuggly and funny and cute and loving, and still eating and doing all that cat stuff... so I am so grateful for happy time spent with her. She is on my lap right now, halfway on the laptop keyboard! I took her to a new vet last week whom I really liked, so I know that at least she will get very good care as she needs it.

4. For donuts. Do I need to say more?

5. For old friends. It has been so fun to reconnect with people on Facebook. My old best friend from WAY back (who now lives in Florida, who I haven't talked to in over 15 years), some middle-and-high school friends who have drifted... it's really fun to be in current conversation with so many of them. Lots of people who I have known literally my whole life. Gotta love small towns.

6. For Buffy DVDs. We are completely hooked (first time for Terri, my second time watching them all). So. Freaking. Good.

7. For all the hidden opportunities and unexpected open doors that happen when I least expect it. I figure as long as I keep stirring stuff up, good stuff is bound to pop up with the bad stuff (at some point...). It's a good reminder to avoid complacency.

8. For my mom teaching me how to sew. I am not very talented at sewing (nor very patient) but I am having fun doing a few small projects. I made very simple curtains for the living room, and am going to make some pillow covers for throw pillows for the couch. I have a few clothing items that need slight alterations, and I'd really like to make a few other projects. The Longs Drug Store near my house is enormous and has lots of cheap fabric (some as low as $3/yard! And it's not all ugly!) so I figure why not? It's fun and I'm not itching to paint at the moment (but I will very soon, I can feel it).

9. For the fact that we moved when we did (from the moldy place). Terri ran into our old neighbor at the doctor's today, who has her own health issues, and Terri said that she looked *awful*. She lives in the apartment right next to our old one and suspects bad mold in her place, too. In addition, she told a very sad story of a couple who moved into our old place... the woman was pregnant when they moved in. Very close to her due date, she lost the baby. We don't know why or how... and these things may not be related AT ALL to the mold, but still. I'm super-grateful that we moved when we did.

So, even though bad things do happen to good people (all too often), good things happen too and I'm especially grateful for a lull in the bad things so that I can notice all the things I'm grateful for. Things are good right now. I'm just going to enjoy it.

Back In The (Valcyte) Saddle Again

Well, we had quite a day!

So, Terri finished up her six months on Valcyte last week. We were thrilled when, at the 5 month mark, she suddenly had a small but noticeable rise in functioning, about 10%. This is the first sustainable 10% increase since we started all this treatment, over at least a year and a half. So, good news, right? Even though it was just 10%, we were happy with it, although disappointed that there wasn't more improvement as other folks have had. Still, ten percent is ten percent, right?

So off we trundled to the doctor up in Santa Rosa to see what's next. Overall, it's hopeful news.

He said:

• That since she had that improvement at 5 months, he actually wants her to go BACK on Valcyte for another three months, to see if we can get MORE improvement. He said sometimes it takes people 5 months to see improvements, and that it's worth trying for another 3 months since her body is tolerating it (we say tolerating... but just barely!!). So... back we go on the Valcyte horse. It's a bumpy ride but the doctor seemed very encouraged that she had some improvement. We can do it. Three more months!
• In addition, she is going to start taking a small dose of beta-blockers to deal with the heart symptoms. He says that she definitely has POTS (postural orthostatic tachycardia syndrome) and that the beta blockers should help with the tachycardia and dizzy feelings. This would help a TON. So, we're hopeful about that.
• She is also going to do a two-week trial of this immune modulator that is experimental. We're not sure how much it costs, but hopefully we can afford it since it's pretty cutting-edge. Only one manufacturer in the US makes it, and there's only about 5 doctors in the US who use it. We'll know after two weeks if it's working.
• We asked about diet, since we were figuring that the next step for us at home would be to eliminate toxins, etc. We were looking at macrobiotic diet because of it's high rate of success with cancer patients and other people with chronic conditions. He said that macro would be great, but that even better is a kind of raw-food diet (which he, himself, follows). Hmmmm. So, he's going to send us information about it and we'll see what it looks like. I figure it's worth a try to see how we feel on it (of course I would do it with Terri). He said that some people have had really incredible recoveries from CFS (and other conditions) when they do this diet in conjunction with treatment. So, we'll see. I'm curious and excited about it. Although a bit nervous. Well, we can ease into it, right? I feel okay about trying it since he actually follows it himself. He says it's yummy and he's seen some amazing results with patients on it. That kind of says it all. However, macrobiotic really appeals to me... so we shall see. I suppose any major change is hard and it's best to just ease into things. Trying to keep an open mind here.
  

Various other bits of helpful information was exchanged, but those are the high points. Basically, he was encouraged, which in turn means that WE are encouraged.

So... either macrobiotic or mostly-raw. I sense a giant change in our eating habits sooner than later. You know what this means, right? Eat brownies while we still can!!

The Stink About Deodorant

Ok, girls. Let's get real.

For the past four or five months (actually about the past year), I have been on the search for a decent antiperspirant/deodorant. I used to be an Unscented Secret girl all the time. I didn't want vanilla, or chai, or flowers, or powder, or anything. Just plain. It worked all the time. I was happy with it. And then... the 30s happened. Suddenly, I don't know why, but my body chemistry seems to have changed somewhere around age 33. Now, I'm suddenly stinky. Or rather, my body + Secret (or any other deodorant) is suddenly stinky. Without deodorant I just smell like... a person. Not necessarily stinky (until I start to sweat). However, something in those deodorants are causing some ungodly chemical reaction and it's seriously gross. I try not to be overly dramatic about things, but the smell actually kind of burns my nostrils. Embarrassing, but true. It's really gross.

Not to mention how icky most deodorants feel. Sticky and slimy and like I have a chalky film over my armpits all the time. It's really kind of gross. I can't stand it.

At our last bookclub, we had a minor discussion about this. Everyone agreed that most mainstream (aluminum) antiperspirants/deodorants were stinky and gross, and most natural deodorants didn't work. I had most recently tried Dove (two kinds) and was sort of happy with it... but in the past week or two, it's back to grossness.

WHY?!?!?

I have gone through at least five different brands in the past six months (I have seriously tried everything recommended. It was all grossness). I've tried the crystal (which I used to love). I'm wasting $$ left and right, and you know how much that drives me crazy. However, the horrible burned-chemical smell drives me to try anything at all. Seriously, this did not used to be a problem. Is it just me?

So, today I decided to just go crazy and try making my own. I saw a post by Amy Karol on Angry Chicken on how to make your own, and I had all the ingredients (well, mostly) here at home, so I thought I would give it a try. Also, since we are going to be moving even more towards minimal chemicals here at home, I figured since this was super-cheap and easy, might as well give it a shot.

So far, so good. It's not terribly hot today, so I'm not sweating at all. It smells super-yummy and no chemical stink. I'm going to try it tomorrow and see how it goes out in 'the real world,' but so far, so good. I don't know how much wetness will be an issue. We'll just have to see.

Maybe I can go with this option on all but the hottest or most-anxious days. Because I would do anything to not smell that horrible deoderant-stink on myself again. Seriously, yuck.

There seem to be many variations on this out there, including how to get it into an old deoderant stick container for easy application. I'll wait until I see how I like it before taking that step. Here's the recipe from Amy, and here's what I did:

* About 1/4 cup baking soda
* About 1/3 cup cornstarch
* A tablespoon or two coconut oil
* A few drops of nice rose-jasmine essential oil
* A few drops of tea-tree oil

Mix it all up to form a cream. Apply. I smell very faintly like roses and jasmine and coconut, with no burned-chemical smell. I also have a feeling this would be very effective on feet to mitigate that summer-sweaty foot problem. Even if it turns out I don't like this for armpits, I think I'll keep using it for the feet.

I haven't tried the deodorant from Lush, and I haven't tried the other kind Amy mentions in her post. I'll give this homemade stuff a try for a little while. I'll report back.

Celebrate!

No more Valcyte!

Terri has done the seemingly-impossible and has completed six months on Valcyte.

A quick primer on Valcyte: a powerful antiviral used mostly to combat cytomegalovirus (CMV) in AIDS patients. Has been shown to be effective on some people who have CFS (Chronic Fatigue Syndrome), which can be caused (in part) by the human herpes virus 6 (HHV-6). Very toxic and nasty.

Valcyte can have a number of not-fun side effects including: lowered immune functioning, intense mood swings, nausea, severe body aches, lowered liver functioning, fatigue, etc. Which are all also symptoms of CFS. So, basically, it's like having TWICE the fun. Hoo boy. For six months.

But anyway, Terri passed all of her blood tests (you have to have liver-functioning tests for the first few weeks, then monthly for the rest of the time) and somehow -- somehow -- managed to stay on it the full six months. This was not fun for anyone in this house. But, since Terri is one of the strongest-willed people I know, she persevered and was rewarded last month with a slight upswing in energy and stamina. We're hoping that this means that it had some effect. The positive effects can keep growing for a full year after you take Valcyte, since the body needs to repair itself after six months of such a toxic drug (similar to what happens when you finish chemotherapy).

So now what? Well, today we are resting, since we are both exhausted. Maybe we'll attempt going to a movie later. Or maybe we'll go to Best Buy and pick out some kind of gadget as a reward. But mostly, I think today we are laying low.

But then starts phase-whatever (I have lost track of what phase we are in with all this). Healing. I have to take a good hard look at our diet and the chemicals we use in our house, since what we need is clean, clean, clean. As few chemicals and toxins as possible. We're already vegetarian but we could eat more organic foods. We already clean with non-toxic cleaners, etc., but we could probably take it a step farther and do without a number of other chemical-laden items in the house.

So, reducing the toxic load. And then working on all the rest of it: Stress. Stretching. Getting sun and fresh air. Filling our minds with good things.

Can I just say what a trooper Terri was throughout all this? This was NO FUN for her. Every time she wanted to give up, she somehow pulled a hopeful rabbit out of her hat and soldiered on. We sometimes had to remind ourselves that we were not dealing with the usual circumstances and to be extra kind and forgiving to ourselves and each other. Hard stuff has happened in the last six months, but somehow we made it.

I don't know what the next six months holds, but it's going to be better. I know it will be. I'm sure there will be hard times (there always are) but this gigantic hurdle is out of the way. We go see her doctor on Thursday and we'll know more about next steps then. If you'd like to stay abreast of her progress, you can follow her excellent blog over at CFS Warrior.

However, tonight is a night for celebration (with or without Kool and the Gang). Maybe some favorite take-out, a favorite movie, some pie for dessert. Maybe a drive in the woods. Maybe a trip to the gadget store. We'll see. However, I for one am thrilled and relieved that we have reached this milestone!

In Serious Need Of Comfort Books

We are going to the library tomorrow. I need a game plan. All the books I have out right now are far too ambitious for my shell-shocked brain. (I can't even read Gaiman's Fragile Things, that's how bad it is)

I can't even come up with a list for myself, that's how pitiful I am!

So I poked around on Ye Olde Internets and came up with a starting point. This is the sort of things I'm in the mood for. Here's my list (to start)

* Louisa May Alcott (some of her other books, not Little Women, which I just reread last year)
* Laura Wilder books (On the Banks of Plum Creek, or maybe The Long Winter...)
* The Secret Garden
* maybe something like Agatha Christie or Sherlock Holmes
* A Prayer for Owen Meany
* a big stack of Roald Dahl
* lighter classics (Oscar Wilde, perhaps?)

I'm also thinking of going to the YA section and pulling down some old favorites.

Anything I should add to the list? Please tell me your favorite comfort books!

**
In other news, after a chiropractic appointment, car-shop appointment, and physical therapy appointment, I can say that none of the damage is too severe (to either me or the car) but work must be done on both bodies. Car needs a new bumper and maybe some body straightening. I need some body straightening and could probably use a new bumper myself, now that you mention it...

My PT also recommended that after all my treatments, I find a Pilates class. He said I'm amazingly flexible (thank you!) but need strengthening for my back (aw, shoot). So, I'm going to look for something hopefully in my neighborhood.

Tiger Lily is sleeping a lot (so is everybody else) and being very cute (so is everybody else). I'm going to the pet food store tomorrow to get enticing favorites. Now, if only I knew what those enticing favorites were... (picky kitties...)

Feeling better today. My back feels less like it's on fire and more like someone poured warm syrup all over it. This is a good thing, contrary to how that sounds...

It's All A Bit Much

Dear God:

Thanks for all the good stuff, but please cut back on the bad stuff.

Thank you,
Daphne, Terri, Katie, Cleo and Tiger Lily

So.... today I took little Tiger Lily to the vet to have a lump examined. Lumps are never good. In this case, it seems particularly not-good. There's a very strong chance that she has mammary cancer. Which is not good. Really, really not good. The growth is pretty big. I'm very worried, and deeply scared.

We'll find out in a few days (maybe tomorrow) if it's malignant or not. I'm dreading all this. It's part of being a pet owner -- part of being alive -- but it sucks.

Our little Tiger Lily is the sweetest little kitty ever. She has had her share of mishaps: being a stray kitty (luckily found by me!), falling out of a 3-story window, having numerous serious bouts with mysterious viruses (and making miraculous recoveries), etc. However, she has the sweetest spirit ever, so friendly and funny and loving. We call her The Little because she just seems like a little baby, so innocent and curious and needing to be loved and snuggled all the time.

I can't imagine life without her. We have just been sitting in bed crying, praying for... we don't know what. For a benign tumor, of course. That her life continues to be sweet and full of love, no matter what. She isn't acting sick right now -- is eating fine, etc., so I'm hopeful that this means she'll have a good quality of life for however long, in any case.

I just feel like: come on. Terri has a chronic illness (she's doing a little better, by the way -- yay!), Katie has chronic renal failure (which is, miraculously, stable so far -- so we are very lucky), Cleo is getting older (she's at least 13 or 14 by now) and now this.

It's all a bit much.

I'm really glad I've been on vacation the last few days. I'm more rested and feeling better. I know I have to take really good care of myself. I'm not quite sure what else I need to do. We just bought a copy of Pema Chodron's When Things Fall Apart, so I think I'll be reading that. Terri also mentioned church again... I'm really not very churchy, but I could use some spiritual guidance and community support, so I'm all for it.

In the meantime, no more sad books for me. Lots of rest and fruits and veggies. Lots and lots of kitty snuggles.

Here's Miss Little doing what she does best: stealing someone else's dinner (in this case, Thanksgiving stuffing)

Good thoughts would be welcomed. Thanks, everyone. I'll post updates as we get them.

Some Thoughts On Food

This butterfly has nothing to do with food, but it's pretty, and it's on my finger. So in it goes.

So this week I'm doing the Detox Diet again. I'm trying to do it every 3-4 months, since it really helps me feel better. I did it last year for the first time (you can start reading about it here) and it was great. I've done it a few times since and each time, around Day Four, I start to feel better. I do the cheater version: just fruit, veggies and rice, plus some vitamins and lots of water. I should be doing the meditation and exercise and whatnot, but frankly that's just too much work. And I'm tired. So, happy food and more rest -- that's my detox diet.

It's really not hard. Just all the fruits, veggies and rice product you want, in whatever form. No starvation, no weird recipes or thick glop to drink. Just food that I like to eat anyway.

It always makes me wonder why I don't stick with it, in modified form, longer.

One is that it does take a little bit of effort and planning. You have to have the fruits and veggies around, and you have to think about what to make with them (or be prepared to eat them just plain, which is actually usually fine with me).

Two is that the baking always trips me up. Baking is such a stress reliever for me, and it's fun. I'm trying to whittle it down to baking only once every week or two; we don't need baked goods all that often but apparently I need the stress relief MUCH more often.

(yes, I could substitute in exercise for baking, but I did that last week and what did that get me? A big old bee sting on the side of the head, that's what!)

Really, other than baking (and cheese), I don't eat all that differently than this diet most of the time anyway. I think it's the sugar and wheat that does it to me. I don't eat very much cheese, just a little bit now and again. So, that leaves the baking. And sugar in general. I think I'm very sensitive to it, since once I'm 'off' sugar (and wheat) for 4-5 days, suddenly I feel GREAT again.

But do you know what a drag it is to avoid sugar and wheat? It's a HUGE DRAG.

So, we'll see how it goes this time around. I've been looking for a longer-term project, and I'm also hoping to feel better, longer. So maybe I'll try some new things with the diet, over the summer. I'm never going to stop eating sugar altogether, but maybe I can try some new, lower-sugar desserts, and going wheat-free is relatively easy since I rarely eat bread. Just the baking. Dang.

Maybe (and here comes the Virgo in me) I could devise a month-long menu plan full of fruits and veggies, with low-sugar desserts built in. (I need dessert. I really do.) Oooh. And then the graphic designer in me wants to make it all pretty and stick it up on the fridge.

Where I will soon forget about it, even though it is right in front of my face, because I have the memory of a small chicken these days.

International ME/CFS day

Today is International ME/CFS Day and I've decided to write a short post in honor of my sweetie, who has this devastating disease. You can read about her struggle with it here.

For the past two years, give or take, we've been going up and down and around the rabbit hole of CFS (Chronic Fatigue Syndrome) and the medical system. It's a joke. We've been lucky enough to find a good doctor, but he's not covered under our insurance. Thankfully, the medications have been, which is a lifesaver. There isn't a part of our lives that haven't been touched by this diagnosis. We continue to struggle to find a lifeline into the next phase of our lives, whatever shape that takes. We hope for health, but are trying to accept what is.

I don't feel right about describing her experience with CFS/Lyme/etc. since she does it so eloquently on her own blog, but I can talk a bit about my own experience. I think it's got to be terrible to watch anyone you love struggle with any sort of health issue. It's taken me down to the depths of my own fears, weaknesses, and ugliest places. I've also found a lot of strength and unforseen resilience. I'm a caregiver by nature but I refuse to take on the 'role' of caregiver -- I'm Terri's partner, and I do what any loving partner, friend, or family member would do. I care, I love, I keep things going. She would do the same for me. I witness. I hold her hand. I listen. I hold belief and faith and hope when she can't find it for herself.

In the past year I have really gotten down to the nitty-gritty of who I am. I've surprised myself. In the face of hopelessness, illness, a major move, financial insecurity, and loss of future plans, I've maintained a decent mood (most of the time), health (most of the time), financial security (most of the time) and a deeper sense of hope and faith than I've ever had in my life. I've cried a lot of tears and faced all my worst fears. Sometimes it's more than I can swallow and I give up, curl into a little ball in my car, and cry my eyes out.

But (and not to sound falsely cheery) somehow I always manage to come out the other side with renewed hope and faith, and strength and determination. It's the We Will Not Fail plan. I refuse to accept a hopeless future. I simply refuse. I don't know what our future will look like. I'm sure we will always have to watch Terri's health. But I know she will regain a lot of functioning. I know she has a brilliant career ahead of her, whether it's in the workplace or as a writer. Or maybe simply as a partner, and maybe a parent. I know that things will not always feel so scary and unsure.

Currently she is being treated with Valcyte, a powerful antiviral. Some tests have shown that she has an elevated level of certain viruses, and Valcyte has helped about 50% of the people who take it. It's a yucky treatment: side effects include fatigue (on top of already debilitating fatigue), mood swings, increased pain and nausea, and a whole litany of other joyous symptoms. We're on month 4 of a total of 6 months. Then, it can take up to a year for the body to recover from the drugs. It's a long process. Terri is not so sure it's working. I think otherwise. She has ups and downs, but overall I see improvement.

We also had to move in December due to mold. For many CFS patients, mold poisoning and Lyme disease can also be in the mix. Nobody knows why, but it seems to me that it's because the CFS (which can cause lowered immune functioning) opens the door for increased susceptibility to these other things, which compound each other into a big, giant mess. We've treated the Lyme (last year this time). We got out of the mold house (in the most stressful move of my life). And now we're treating the viruses. So I am hopeful.

I can't remember who said this, but someone once told us that treating CFS is like being underwater in crashing waves. You don't know which way is up; all you know is that you are still suffering. You're still being rolled and tossed. You fight and fight, and try every known treatment under the sun, but you don't know how close you are to the top, to breaking through the waves to fresh air. Eventually, maybe your head pops up and you get a breath, then it's back under. You don't know which treatment is doing what. But they all work together, and one day, you reach the top. You find your way out. So it's worth trying everything.

Not everyone finds their way out. So many people suffer for years and years. The rest of their lives. Some people commit suicide. Some people lose everything and everyone. My heart breaks for these people. I am determined that I will do everything in my power to help Terri reach the top. She might be weakened by the effort, and her life may be different than we had expected, but I know that she will have a new life, one full of deeper meaning and appreciation.

I really don't know if everything happens for a reason. This certainly seems senseless. However, it is true that there are opportunities for growth in every situation. I'm learning so much about myself and the stuff I am made of. I'm learning what real love, in the face of extreme fear and despair, is like. I'm learning how to find joy in small things, and to appreciate even an hour of being outside with my sweetie.

We live a life that is very home-centered. But frankly, that's okay with me. The only thing I really miss is the opportunity to travel and go camping. But I think that that will be possible in a year or two, or sooner. I'm determined that the things that really matter to us: having a home, a child, creative expression -- we will have those things. I don't know what any of those things will look like. One thing that keeps me going is the thought that our situation is not unique. Things happen. People get cancer. Have accidents. Lose jobs. Lose everything in fires. Or worse. And people adjust, find new direction, find inner strength, and they move on and live their lives. And so will we. And so we are.

Terri is the bravest person I know. She is strong and a fighter. She falls down and gets up over and over and over. This struggle has taken everything from her, and still she remains the love of my life -- a powerful advocate for me, my biggest fan, hilarious and a practical joker, an adorable absent-minded professor, a person with a heart of gold and an endless well of empathy and kindess. She has her bad moments, of course. I do too. It's not easy to live with this thing. But she's an amazing example of never giving up. She's finding her way. I am so very, very proud of her, and am so thankful to be in her life and to be here to witness this phoenix journey. She is going through the fire now. We both are. Old skins are being burned away. But I know that she and we are coming close to a rebirth -- it may be happening right now. We probably won't know until we're on the other side -- whatever that may be.

I wish this weren't happening, but it is. The best I can do is learn from it, become a better, stronger person -- and do my best every day. I am trying. It's hard. I fall down, too. Ultimately, this is just what's on our path. So we deal with it.

If you'd like more information, you can read about it on the CFIDS site here.

Thanks to everyone who has offered comfort, support, and help of every sort, including just reading my blog. You will never know how much your friendship and love and presence means to me and to us.

The No 'Poo Experiment: Conclusions

So, after a total of about a month and a week or two of not using regular shampoo on my hair, I finally caved and have now switched to "low 'poo." Here's what happened.

I decided to try this experiment to bring out more waviness in my hair, see if I could tame the frizzies, and ultimately use less shampoo (which has nasty chemicals, although that was not my primary reason). I have shoulder-length, very fine, kinda wavy hair that can turn loosely curly with some coaxing.

Week 1 was fine. I used baking soda and water to 'wash' my hair, and rinsed with diluted apple cider vinegar. It looked pretty good. The ends felt a bit dry, but I liked the enhanced waviness and the 'piecey-ness' that happened.

Weeks 2-4 were dicey. Some days my hair looked great; full, curly, wavy, bouncy, pretty. Other days the roots seemed really oily and gross, and the ends could get super-dry and tangled. This seemed to vary with how much I rinsed my hair -- the more rinsing (in plain water) the better. So I experimented with washing only every other day, etc. That seemed to work better. I also gave up the vinegar rinse, which didn't seem to be doing anything.

Week 5 or so the ends of my hair were so dry that I finally put some conditioner on them. That helped. I also used a little castile soap to wash the roots and that helped for a day or two. My hair was starting to feel heavy, although it didn't look too bad (I hope). Starting to have my doubts about my hair's compatibility to "no 'poo."

And then finally one day I had a day where my hair was so oily that all I could do was pull it back into a bun and wait to go home and wash it. I washed it with just a little bit of Neutrogena anti-residue shampoo, and suddenly my hair felt great. I think the natural oils that had been building up *had* made a difference, because my hair felt very soft and didn't have any flyaways like it usually does. I didn't use any conditioner that day, and I really loved how my hair felt and looked.

Since then (about a week and a half or so) I've been washing my hair only every three days or so, with a very tiny dab of shampoo, and then conditioning the ends. I do a very good rinse on the other days, if I'm not happy with my 'bedhead.' I'm just using up the shampoo and conditioner that I already have, and when I run out, I will be switching to a natural brand with no sodium laurel(th) sulfates.

Lessons learned: I definitely do not have to wash my hair every day. Every three days seems to be perfect for my hair type. I also don't have to use very much shampoo - just a dab, to refresh the roots. Conditioning just the ends seems to work great, too. My hair is much wavier and softer, with not so many flyaways. It also looks better just out of bed -- holds my style better, which saves time in the morning.

I do hear that if you have dry, curly hair, then no 'poo is a great solution, and I can totally see that. Also if you have very short hair, I think this would work great. My hair is just too fine and too silky (as opposed to porous) to handle the extra oil, which a different hair type would probably just soak up and handle just fine. So. I'm happy I did the experiment, because now I know, and I'm very happy to eventually switch to the most low-tech, natural shampoo/conditioner solutions, once I use up what I've got.

Was it worth it? Totally. For a cost of about 4 days when my hair felt really yucky, I learned a lot and can now cut down on my hair care even further, with better results. Fantastic!

So Far Behind, But So What? And, Book-Related Movie Review!

Oh, the photos... they are piling up all pretty and spring-like and joyful... in my camera. Not downloaded. Unprocessed. Unshared. Oh well. At least I'm taking pictures. Soon, there will be happy pictures to share.

Yesterday I spent most of the day with a very sweet eight-year-old. We went for a hike with his puppy (talk about "Boy And His Dog" cuteness.... small boy, in waist-high weeds, with Jack Russell terrier bounding along beside him, barely able to see...), then went to the Oakland Zoo. While we were waiting in line for the sky-line ride thingie, I glimpsed the white tiger, sleeping on his back, sprawled out with limbs eagle-spread, looking exactly like my lazy kitty Cleo when she is sleeping hard, sprawled out. It was adorable. If I hadn't been waiting in line with a very excited little boy, I would have abandoned my place to go take a picture. It was almost unbelieveably cute.

Oh! I know. Here's a brief Book That Was Turned Into A Movie review. I rented The Woman In Black, which was really hard to find. As you may know, I read the book earlier this year, and really liked it. It was very effective, not super-scary but very spooky and kind of a perfect ghost story (and I'm a hard customer to please). I thought that it would be a fun treat to watch the movie after my long day of kid-sitting... and it was fun, but ultimately, like so many book-based movies, sort of disappointing. It was pretty faithful to the story, with a few changes that I didn't understand, because they weren't (in my opinion) any more effective, and wouldn't have been difficult to film or explain, so I don't know why they changed certain things. But the acting was fairly good (it's a BBC production) and the sets were very Masterpiece Theatre, and Eel Marsh House was gloomy and forboding. While most of the move really wasn't that scary, there were a couple parts where I was very creeped out, and one scene where I literally shrieked and threw the blanket over my head and waited until Terri told me it was safe to come out. So, it would be worth watching around Halloween, but it wasn't as good as I was expecting, based on the reviews. But who knows? You might enjoy it more.
***
Hair Update: Okay, this is approximately Week Three of the No 'Poo Experiment. I'm really not sure what to do about it right now. It *looks* pretty good (I hope) and it doesn't really feel greasy or anything, but it feels... heavier, or something. When I don't blow-dry it, it curls more than usual, which is nice. I'm not sure, though. I have very fine hair and the roots need all the 'lift' they can get, and they aren't quite sure what they're doing with themselves, yet. Some days they are nice and bouncey, and some days they are very flat and I hate it.

Washing every day with the baking soda isn't working -- it was getting very dry. So I switched to washing it with baking soda every other day, which seemed better. I think I'm going to abandon the vinegar rinse -- it seems to be making the ends of my hair very dry. I did a couple days where I simply used a little conditioner on the ends, and that seemed to work better. I also used a miniscule amount of shampoo one day, just to see what would happen, and my hair felt a little better then, but didn't seem to lose much of the natural soft oils that have been developing. So, maybe a once-a-week mild shampoo might be good, too.

I can see how if you had very thick, curly hair, this technique would work really well. I'm still unsure how it's working for my fine, wavy hair. I'm hoping to find a combination that works well, giving me healthy (and pretty!!) hair with minimal care and chemicals.
**
Related/unrelated: discovered today that plain coconut oil (sold solid, in jars) makes EXCELLENT body moisturizer. I bought some because I had read that it's a good whole-food high-temp cooking oil (I'm still researching this), but then I also read that people use it as a massage oil or dry-skin remedy, and also use it as a leave-in conditioner for hair. Terri has very thick, coarse hair so we tried it on her hair today -- beautiful. So soft and lush and not oily or greasy at all. So we tried it as a lotion for dry legs and feet -- also beautiful and soft. Better than any of our other lotions. So, yay! I love multi-purpose items. Not sure if it would work as conditioner for MY hair, but I may try some on the ends tonight, and then wash it with a bit of shampoo tomorrow and see how it goes.

Ok. Enough for tonight. Forgive my errant blogger ways. I seem to be in a transition period that is stretching on and on, but it's all for good. And, book review of The Seance soon, probably tomorrow!

More Experiments

What a busy day I had today! But only the best way. I slept in late (I felt like a truck hit me, and COULD NOT GET UP) but then had plenty of energy all day.

Photos coming tomorrow (or the next day), but I did TWO crafty projects today, as well as a short errand trip with Terri, and a couple phone calls. This is kind of amazing, considering the state I've been in all week.

This next experiment doesn't really fall into the money-saving category since I only buy shampoo and conditioner maybe once a year, but I think I'm going to try the "No-Poo" thing I've been reading about on various blogs. I've been afraid to try it since my hair is so fine and usually doesn't respond well to not washing, but I keep reading about how other people with fine hair try this and their hair does really well after a few weeks.

So what is this horrifying experiment of not washing hair? From what I gather, instead of using shampoo, you use a baking soda solution on your roots (every day or every few days) and then an optional apple-cider vinegar rinse as conditioner. This balances the natural oils in your hair and your hair, in turn, becomes lustrous and thick and beautiful and you'll never want to wash your hair again. So they say.

The ONLY reason I'm willing to try it is because I do the same thing (sort of) with my skin: once I turned 30, it started getting very oily and the more I used 'oil-free' skin care, the more oily and breakout-prone it became. So I switched to using jojoba oil on my face and within days my skin balanced and has never been more clear and soft. Will it work with my hair? We'll see.

So. To start, my hair is very fine, with quite a bit of natural body and wave. It tends to go flat, however. What I'm hoping is that in the end, it will be more wavy and less prone to flyaways. It's finally long enough that I can reliably put it up for weeks on end if necessary, to get through the possible 'adjustment' stage. I'll give it a month. If it is unbearable, I have no qualms about switching back to shampoo.

However, now that I think about it, I have known quite a few people who didn't wash their hair with shampoo, and they had lovely, thick, shiny hair. So maybe it'll work. We'll find out, won't we! I'll keep you posted with weekly updates.

In other news: the leg is finally healing well. It's still gross, and it's very itchy now, but it's looking much better. Thank goodness!