Mood:  celebratory

Between simply bucking up and making use of a simple weight loss program, I have managed to lose nearly 15 pounds since June 2009, which is when I started using Lose It!, an app put out by FitNow for the iPhone. While I still have the pain of fibromyalgia and its associated sleep issues (I also have a touch of sleep apnea that my doctor and I are working together to combat) to deal with on a daily basis, I have been able to fit back into a lot of my clothing, and getting around is a lot easier than it was when I was at 160 pounds last summer (I'm now at 145.6).

For anyone seeking to lose weight gained during a long illness or after the birth of a child, Lose It! might be a good program for you, too. I haven't found that I needed to change my diet all that much (I still enjoy the occasional burger and fries) as much as I had to change the portions, though I do sometimes eat more greens and staples than I used to, as the caloric intake is less and they fill me up more. I've also found that cutting out the number of candy bars and bags of chips I used to eat also helped, but that particular issue was also brought on by the fact that I couldn't sleep, and as a result I craved a lot more sugar thinking it would help me manage my wakefulness and time. ProVigil and a change in pain medication have helped me manage this particular issue, and my path has been fairly steady overall. 

Mood:  bright

Via Feministing.com: Scarleteen.com, a group dedicated to offering intelligent, factual and good information to young adults seeking information about sexual health and reproduction,  now takes questions in the form of text messages.

This is great news for anyone who may have a question they're unable to look up or are else too embarrassed to ask a family member, friend or teacher. As well as saving a teen humiliation in person, it also will -- hopefully -- save many young people the further annoyance (and potential waste of time) of calling a show like Loveline, which is a shadow of its former self now that Drs. Judy and Drew are gone.

Mood:  a-ok

Lately, I've been doing some research on the internet to find other people with fibromyalgia. I found a lot of garbage, but I also located some real gems, two of which I'd like to share with you today.

I found Esta's artist's website when I was up one night late due to pain and insomnia about a year ago. I was looking for inspiration, and her artwork provided me with a wealth of dreamscapes into which I could escape from my misunderstood, pain-filled life.

About a month ago, I went to her site in search of a set of cards to mail to family and friends who had attended my wedding. I wanted to thank those who had come a long way to the ceremony, or who had gotten us a nice gift, and once again, Esta's site didn't disappoint. It was during this last visit that I ran across her "Fibromyalgia: Never Heard Of It?" link, and being curious -- and also feeling a bit of dread for her -- I clicked the link, which led to another website.

Esta's words are both harrowing and heartening, and like myself, she is working furiously to help both herself and others suffering from this disorder. She also hopes to educate friends, family and medical practicioners, and her site is full of testimonials, herbal wisdom, and links to others.

Another site I came across recently was for The National Fibromyalgia Association, which puts out a great magazine called Fibromyalgia AWARE. I just received a sample copy in the mail, and though the editing could occasionally use a boost, the information on the pages is good, solid, and smart, and I recommend it to anyone who has fibro or who knows someone who does. If you're seeking to understand it in bite-sized chunks, this is a good resource.

Mood:  a-ok

Over the past several months, I've read accounts of doctors and laymen who do not "believe" in fibromyalgia. To that, I must retort that there are other things people haven't believed in over time, including:

1. The Earth is round

2. We have actually landed on the Moon

3. Elvis Presley is deceased

4. We didn't believe that black people -- or any woman -- should be able to vote  

5. We believed that women's wombs wandered their bodies, thus explaining supposedly irrational frustration with patriarchial forces (lol).

6. We believed epilepsy was caused by demonic possession! /eyeroll

7. People believed AIDS could be given to the population by sitting on a toilet seat or handling currency.

Remember 10, or even 5 years ago, back when it was thought that Chronic Fatigue was a figment of a sufferer's imagination? Shall we take the Wayback Machine to the time of bloodletting via leeches, Greek theorizing that women's wombs wandered their bodies, or to a time when many Americans believed human slavery was acceptible?

Just because a medical professional doesn't believe in something doesn't mean it isn't real. Like a once fine cheese that has been stuck at the back of the fridge for too long, old knowledge can eventually grow moldy and unusable. A bad doctor considers him or herself to be at the top of their field, while a good doctor is always learning, studying, and looking at the latest developments. A physician who is settled in his or her ways at the expense of your health care may not be a doctor you want to stick with, as such a person is most likely not open to new research.

However, I also believe that the entirety of the burden of your care should not be placed only upon your physician. As a patient, it is your responsibility to learn about your condition, especially in the event where you are confronted by a doctor or member of the medical establishment who doesn't "believe" in what you have. You need to educate yourself so you CAN educate your doctor, and if your doctor refuses to listen, you need to know how to search for someone better. With everything available to us via the internet, friends, and modern technology, there is no reason for you to suffer unnecessarily. The more you know about your options -- and how to get around red tape and think outside the box -- the faster you'll heal yourself.

Cheers, blessed be, and best of luck to you all!

Mood:  d'oh

Oh, Ambien! I know you work for other people, but you made me sullen and depressed, and I didn't get anything done last week as a result of your powerful compound. You were a huge drag after the second day, and I know I lost some work because of you. With this in mind, I bid you adieu and accept a new suitor into my sleep life.

Temazepam: it sounds like marzipan (yum!), but I don't have high hopes. That said, I'm going to give it a try, as I may end up being pleasantly surprised. The benzos, MAOIs, SSRIs and triphasics usually make me nuts, but I've had some success with taking valium before major medical tests or surgeries, so I'm going to suppose I have a small amount of faith in temazepam's ability to improve the quality of my sleep, as it's supposed to be similar to valium, but stronger.

Typically, I switch to a different drug every few weeks or so, as I end up developing a tolerance and become groggy and grouchy rather than wide-awake and wonderful. In an effort to find one thing that works really well, I've done some experimenting, but most sleep drugs seem to have a similar effect: they work great for a couple of weeks, then I wake up one morning at 4:30, toss and turn for a few hours, and bitch and moan my way through the day. This is something I understandably want to put a stop to. As it stands, sleeping pills aren't supposed to be taken for more than a couple of weeks at a stretch in the first place, but with what I have, I end up on on them for 4-7 nights a week for months at a time.

In working to reverse some of the more odious effects of fibromyalgia and ES, I've dutifully done my exercises several times a week (excepting last week, when getting up was tough) and I enjoy them. I've changed my diet to include less sugar, white flour, wheat gluten and the other things I've been told to avoid. My diet, which is in its 9th week, seems to be working. I've dropped about 8 pounds since I started. I'm receiving insurance-approved acupuncture for intense sciatic nerve pain, and in general do all I can to watch my moods, energy levels, and the way I interact with the world. Still, depite all of this, I'm finding that while I am happier again, I'm also sometimes EXHAUSTED by it all, especially on a day when none of my solutions work and I feel as though I'm back at square one.

I did have a ray of hope recently, however, that removed a large part of my anger and overall frustration with having the disorder in the first place. I'm assuming a lot of different people read this blog from day to day -- all kinds of creeds, sexes, and races -- and I'm going to venture out on a limb here and suggest something that may help those who are either suffering from nebulous chronic pain or who know someone who is: guided meditation. To some of you, this may sound silly, or perhaps you've tried it to mixed effect, or perhaps you're a member of a religion whose members frown upon the practice. I'm currently working on a post specifically about these experiences, and will post them within the next few days, as I'm still collecting my thoughts on what happened, and how to explain it for the benefit of others no matter their religious preference, if any exists at all.

Mood:  a-ok

While I am in as much pain as *ever*, I thought I'd take a moment and report a little progress to you all. After being on the Lose It! program for almost 2 months, I have lost 7 pounds! This averages out to be about 3/4 of a pound per week, which for me -- or just about anyone out there who has ever tried to lose weight -- is real progress.

I have gone from eating about 3,000 calories a day with no exercise to eating around 1,800 calories per day and exercising with the following regimen: a minimum of 30 minutes of walking and one 22 minute Classical Stretch program per day. That I have participated in a number of camp-outs this summer -- including Burning Man and also a few events local to my area -- has probably helped my weight loss, as the heat caused me to drink more fluids and eat less food than usual, but all-in-all, I know that it is also because I am eating better and am taking care of myself more. My medication -- namely Provigil and vicodin -- is also helping with this task, as I'm able to stay awake longer and get more done in my day. 

I've switched sleeping meds recently, and am now taking Ambien to help with the fact that I wake up some 15 times a night -- ugh -- and if that and the temazepam my doctor suggested doesn't help, my next stop is Xyrem. I had a sample of it some time ago and loved it, but in order to get this medication -- which is supposed to help with both my fibro and my sleep disorder simultaneously -- prescribed officially, I have to try other meds my insurance company has suggested first and see if they help. I'm hoping they can, as Xyrem is prohibitively expensive, but in the event that they don't, I'm happy to hear there's something out there that can give me a greater chance at freedom from illness.

I hope those of you out there suffering with similar disorders can find the help and peace you need, too!

[Currently reading: Trance-Portation by Diana L. Paxson]

Mood:  on fire

There are times in my life when I wake up at 4 or 5 in the morning, unable to sleep due to the immense amount of discomfort I am in. When this happens, I get myself out of bed, take a vicodin, put on my headphones (so as to not wake up my partner) and listen to a podcast on my iPhone until the pain subsides and I can go back to sleep until it's time to wake up and start my day.

Podcasts are easy to find on iTunes and other places around the internet. There is something for everyone out there under the sun, no matter your tastes. I listen to podcasts on meditation, on spirituality/religion, or else I find some good music. In particular, I love ambient music when I'm dealing with pain. It's minimal but interesting enough to engage my fractured attention, and the combination of hearing tunes or else learning something new is comforting. It takes my mind off of where I am in the present moment, and allows me to see the bigger picture in life. 

No matter what walk of life you are from, there is something out there on the net for you. iTunes alone has thousands of podcasts dedicated to conservatives, liberals, libertarians, Christians, Hindus, Pagans, Wiccans, Muslims, aspiring comedians and those wishing for a full and complete escape from everything for just a little while. Here's a brief listing of some of what I like. Most of these are easily found on iTunes, and all can be downloaded onto any mp3 player:

All*Star Guided Meditations, Ambient Music Blog, Ariel's Meditations, ATC Pagan Information Radio, Bitch Radio, Seal Press Podcast, The College Witch, Coyote Tales, Daily Power Nap and NapSounds (great for when you need to catch up on sleep during the day, but only have 20 minutes or so), Fibromyalgia Weekly, Goddess Roundtable, Irreligiosophy, From the Edge of the Circle, Lady Brain, Lamyka's Podcast, iPod Witch, Geek Witch, Grammar Girl, A Pagan in the Threshold, Redefining W.O.M.A.N., Sounds of Ambience, The Secrets in Plain Sight, The Wigglian Way, Moonshine, and Wynifryd's Meditation Room.

Mood:  a-ok

In reading parts of the new health plan bill, I can't help but wonder a few  things:

1. Why not just expand Medicare and Medicaid to take care of people who need health care?

2. $900 fine for not having insurance? Excuse me, but anyone voting for this part of the bill needs to be voted OUT of office immediately, as that fine mostly hurts the people who most need the free/cheap care in the first place. If you vote for this provision, you're a dildo, plain and simple, and should be locked in a room to watch only the three major networks and eat Ramen noodles for 6 months straight while you think about what you did.

3. Major insurance companies need new rules regarding patient dumping, and subsidies can help curb such actions, along with more regulation. That said, I don't necessarily think starting more companies or a government-administered co-op will necessarily circumvent the process. If anything, it will enable big companies to use them as dumping grounds, and the co-ops will need to be prepared for the possibility.

SIGH. I hope something good can pass, and that we can use it as a stepping stone to a better system.

Mood:  don't ask

Years ago, an English friend of mine with a UK and Canadian passport married another American friend of ours. When I inquired as to when he'd be getting his American passport, he said, "Likely never," and went on to explain why. If you're at least somewhat well-read, you probably already know the answer my friend didn't give up his Canadian or English citizenship: lack of options for affordable health care. He'd had 35 years of success with either going home to the UK or to Canada to get care, and saw no reason to abandon either country as a citizen in exchange for the dog-eat-dog world of US health care.

Health care is a deeply personal issue, and why there are so many people -- probably even uninsured people --arguing against a public option as if it's merely political is nothing short of baffling to me. After all, how do they expect to work, play and fight if they cannot even get out of bed due to an illness or accident? If something happens and they're stuck with a $20,000 hospital bill? Or a $90,000 bill? If the medicines they need are out of reach financially? Would that really be okay with you?

I had to do some soul-searching on this one, and soon realized that if I -- a productive citizen surrounded by a lot of smart, talented people -- know a lot of people without insurance, then I -- and my friends and family -- are probably not alone in our struggles.

1. My mother, a breast cancer survivor who left a bad marriage after 21 years of putting up with my old man's abuse, currently has no insurance because her option -- an expensive employer-based plan -- is unaffordable. She supports my uninsured, semi-disabled stepfather (who at least has the VA to rely on, in spite of its own problems), and this further drives down her earnings potential. As she waits tables at a resort hotel and helps my stepfather with his roofing business on her days off from slinging hash for sports teams and other assorted yahoos, I've had to come to terms with my fear for what would happen if one of them were injured. As I am struggling myself -- my fiancé's mother graciously pays for my insurance -- I am left with little comfort aside from reasoning with them to "be careful!" and prayers for their safety.

2. Because my fiancé went for several years without health insurance (for a while he found it CHEAPER to fly to Thailand for medical care every year than to buy a US health plan), it took one company SIX MONTHS to actually approve him. However, once he was approved, this company actually gave him a BILL for part of said approval process, back-dating him to 3 months before he was actually able to use the insurance. WTF?! Of course he told them to go stuff themselves, and from there went to Blue Cross, which has a more accesible approval process. Can you believe insurance companies actually deny people because they went for a period WITHOUT coverage??? The same thing happened to me, and you probably know someone this has happened to as well.

3. I grew up knowing several people who benefitted from Medicare as children, two of which who went on to become PhD earners, and one who is now a Captain in the Navy (that last point's for all you "f*** the poor" anti-humanitarian types who think the lives of 3-time loser heroin-junkie rich brats are more important than the lives of actual productive citizens).  I know still more who grew up with NO insurance (I spent a few years this way as a child and would have to practically be dying before I could get my family to do anything), and who now have a host of health problems due to the inability of their family to do anything more than rush them to the ER at the last minute or else beg a pharmacist for medical information. As for the parents themselves, I'm almost certain they could have benefitted from being able to have a government-option for health insurance, as a government option is better than no option at all...seriously...and a lack of one is a factor that probably keeps a lot of people further down and out when they could be productive themselves.

4.  I have many friends who are currently uninsured, and who have been over the course of my lifetime. Some are artists and/or are working in the building sector and have no employer-based coverage, and others have white-collar jobs and STILL cannot afford coverage, or else they had a similar snafu to my fiancé and thus gave up.

For more information in a general sense, here are a couple of articles:

1. NPR Radio Show: The New Face of the Uninsured (this one's really frightening)

2.  INDYMedia.org: on 47 Million Uninsured

I don't think Obama's administration has their minds wrapped around exactly what a public option means -- otherwise they'd have a detailed plan to show all of us, and the heart to stick with it -- but this doesn't mean we should just give up. It is possible for more Americans to be covered -- and be covered affordably -- without breaking the bank.