Wednesday, December 31, 2008

New Year's Resolutions

Well. It's been a bit of a tough week. I've been having the "faux flu", that is, I feel achy and weak and sick, like you do when you're about to get knocked down with a really bad flu, most days for the past week. Monday, it actually kept me in bed most of the day, and made me very nervous because I never know if it'll be hours, or days or weeks of being devoid of energy. But Tuesday rocked, I was feeling good and got plenty done, which always makes me VERY happy. Today, I'm feeling a bit iffy again, but determined to at least get out and make a go of celebrating and starting the New Year off right; last year I was too sick, even got all ready, then was too tired to do anything! And look how that turned out. No, not risking that again, lol. The spirits of the New Year must be appeased!

So in the spirit of the New Year, which I am very much looking forward to (funny, seems like a lot of people had a bad year, I keep hearing how glad people are this year's over, lol!)I thought I'd share my resolutions:

1. Get back to eating healthy. Get back on high protein, good carb diet, and add a variety of veggies. (Splurged on sweets for the holidays, ugh!)

2. Go to gym, lose 10 lbs, get muscles back in shape to prevent injury and pain.

3.Work on Healthy Boundaries, get my positivity back!

4. Begin Yoga practice again

5. Work on getting out more, meeting people locally.

6. Make some good girl friends around here.

7. Start dating again.

8. Stay on supplements/medications to promote healthy mood.

9. Get all tests done & medical care that will help SSDI case.

10. Get my first cavity filled, figure out a way to pay for non-silver amalgam filling.

11. Take good care of myself, and regain joie de vivre.

12. Begin writing again and make a habit of it.

13. Get organized, and stay organized. (Even though it's not the cure for Fibrofog, it sure helps.Less hassle in the long run too!)

Sunday, December 28, 2008

Christmas & Stuff

Well. I made it through Christmas. It was actually the best one I've had in years. Got my wish. Did the Christmas Eve thing, as is traditional in my mostly Latin family. Got to see people dear to me that I hadn't seen in years, mostly because I couldn't afford the gas money, am not big on the phone, and was a little embarassed about the state of my life. (Which yes, is not really my fault, but I struggle a lot with guilt, a little voice inside that insists I must have screwed up somehow, even though I've done everything I possibly could to keep my life from turning into a shambles as I fight for my Disability Insurance.)

It just went to remind me yet again of that phrase I read in a book recently, about how when you can't work, your life becomes about relationships. And yes, many times, I've lain in bed, or sat, depressed, musing about how much more bearable my life would be if I just had more people I was close to in it, if my friends or family members would stop by and visit, even if I couldn't entertain them, if I just had people who cared enough to stop by and keep me company, get me out of my head for a bit.

But I always thought it would be hard for me to have people around when I wasn't feeling well; I'm a bit of a perfectionist, and I like things just so; above all, I like people to think I'm fun, and I always dreamed of the chance to be a great hostess. How can I be fun or a good hostess lying on the couch or in bed?

I got a glimpse of what it would be like on Thanksgiving. I'd spent the morning tidying up, & finishing up my cooking, (trying not to chop my fingers off as my grandmother insisted on talking to me while I did it, and I couldn't think how to politely tell her in Spanish that I have a really hard time multi-tasking these days, lol) and by the time I started getting ready, I was exhausted. By the time my brother and his girlfriend showed up, I could barely breathe, my back hurt so much, and I knew I had to get the heating pad on it, and lie down, quick, before things got out of control.

So I invited them into my room, where I made myself comfortable on the bed & applied the heat, offered them seats, and chatted for a bit. It was actually really nice! Kept me from thinking about the pain so much, and probably, stressing about whether I'd screwed up and tired myself out too much to make it to Thanksgiving.

So then I realized, Hey, maybe I don't have to be buzzing around like a bee offering food & drink and fussing over people, maybe it IS okay to just be. That was a pretty cool realization.

So I didn't care if I was getting tired, my fog was driving me nuts making me feel like I had ADD, it was just nice to be around warm, happy, fun people, and best of all, I think they were really happy to see ME. That was the best gift. I was afraid people would be hurt or upset with me, but no such thing. And when I got asked the dreaded questions about what was new w/me & things like that...well I managed to not blurt out any portion of my whole pathetic sob story, and even though the fog kept me from coming up with anything smart or even tactful to say, it wasn't the end of the world. I didn't even remember to ask what was new with them, but it seemed okay.
(I probably stress more than most people about the little things!)

I was good blues-wise for about 2 days just on the good vibes :)

I know it will help so much if I could just get out more and overcome the isolation I've been helping to perpetrate, but it's so hard sometimes. If it's not you, it's people.

I think that may be Resolution #1 for the New Year. Sounds easy, right? It's not though! I've discussed this in support groups before, and a lot of us have the same problems. You never know how you're going to feel. Things that are totally no sweat for normal people can be a big deal, and you don't want to sound like a baby. (I went out the other night with a friend, and they were walking too fast, and in the cold I was having an even harder time than usual, so I asked them to slow down. No big deal, because they had FM too, but if they hadn't, I would fully have expected to be made fun of.)

The other great Christmas present I got (other than money towards my medical bills!) was that I got the YMCA Scholarship I needed to go work out at their gym. My lower leg muscles feel like they're wasting away! (And the upper ones getting humongous! Not w/muscle though!) So I really need to get on that. Resolution #2...

But that's another post. Hope everyone had a Merry Christmas, and if it was as tough on you as it was for me (which I think it was for many people, even those w/o chronic illnesses) just know that a New Year starts this week and things can get better.

Tuesday, December 23, 2008

Need a New Name!

For my blog! It's way too close to another one that's been around for awhile, and I totally respect, and whose owner I wouldn't want to piss off. I just can't think of another name. (Can't think much these days in general.) Any ideas?

More about Depression

Found this cool site when I Googled St. John's Wort/Hypericum.
It describes the different types of depression. Gives tips for helping (or just not making things worse) and even has some eye-opening tidbits about Celebrities & Depression.

Ha, I liked the whole Existential Depression bit. Not just cuz it hits the nail on the head (except I was actually pretty happy w/my job before I got sick.)
Freud always make me laugh. Only this time, he makes sense, too!

Existential Depression
Existential depression is thought to be brought on by a crisis of meaning or purpose in one's life. Any significant transition, especially a change of roles in family or work, can trigger this crisis in meaning. A well-known account of existential depression occurred in the life of the famous Russian novelist Leo Tolstoi. In mid-life, while enjoying health, wealth, and great literary fame, Tolstoi fell into a deep despair as he asked himself, "Is this all there is?" Out of his quest for something more, Tolstoi underwent a religious conversion and formulated a philosophy of nonviolence, renunciation of wealth, self-improvement through physical work, and nonparticipation in institutions that created social injustice. Tolstoi's ideas had a profound influence on many social reformers, including Mahatma Gandhi and Martin Luther King, Jr.

The importance of dealing with existential issues should not be underestimated. A number of clinicians have reported that depression (as well as Chronic Fatigue Syndrome) has a strong connection with a person's lack of success in finding his passion-i.e., not being involved in work/activities that feed the core self. After all, Sigmund Freud defined mental health as "the ability to work and to love." If either of these two essential needs is missing, even a person with normal brain chemistry is going to feel out of kilter.

I thought this was a really nice link too: 23 Best Things to Say to Someone Who is Depressed

Not Just the Holiday Blues

As most of you know, Depression, like FM and CFS, is a true illness. It's not just a case of the blues, having a bad day, or anything like that. There are actual changes that take place in the brain, which many times, are extremely hard to undo without help.
The funny thing is, that I should know this, better than anyone.

I got to thinking, this is the 3rd Christmas in a row I've spent severely depressed. Well the 4th really, but this is the 3rd one I haven't been able to fight my way out of on my own. Something about being broke and not having any control over it at Christmastime. (I kept telling myself it wasn't Christmas, but umm...seriously, who am I kidding? Christmas before last I was so depressed I lost about 15 lbs, because all I could manage to force myself to eat was a protein shake a day, was barely hanging onto my will to live day by day,and last year, I was too sick to take one of my finals, do much for Xmas, or even go to New Year's parties, couldn't pay my rent plus had an all-around pretty bad year.)
I think the worst part this year is, that I potentially could have made some money this year, but my health has been extra unpredictable lately, leading me deeper into depression. And anger. Lately, that's how it seems to manifest itself. It's hard to want to be around anyone when you feel so dark and damaged inside. And generally, people don't want to be around you.

Anyone struggling with serious health problems, not to mention financial disaster on top of it, wouldn't be blamed for being depressed, it's almost to be expected.

The problem is, I'm not just anyone. I have a long history of chronic depression, I've been fighting that battle since I was about 14...and had gotten pretty good at it, but the truth is, I guess I was hoping I could get rid of ONE life-changing illness, so I convinced myself I just "wasn't depressed anymore" and tried to tell myself a positive attitude was enough. But what a lot of people don't know, is that just because you suffer from depression, doesn't mean you have a bad attitude. It's an illnesss. All about chemicals & stuff. Sure, a positive attitude can help keep it under control, but if your chemicals are all whacked out, just wanting to continue being alive through the psychic pain becomes like the struggle to keep your head above water when you're drowning. That's why it's an illness.

You'd think that having dealt with Depression since my early teens, I would know better than to think I was cured, or never really had a problem, or that I that it wasn't a chronic thing after all, just an episodal thing. (Granted, a lot of external problems in my life the last 15 years or so, so I guess it's not too crazy to convince myself it was just that...)
But I mean, at the age of 19, I made the conscious decision NOT to have biological children because I don't think I could forgive myself for passing my Depression on to them.
(Chances are 50-50. Yes, having your own child is a beautiful thing, but I adore children, and if it was my own, and I had to watch them go through what I've gone through with Depression, knowing full well what it's like...I'm not sure I could forgive myself. Worse yet, what if they weren't fortunate enough to survive it as I have...which really, is just barely...Forgive me if I sound melodrmatic, but this is my reality...I can't fathom gambling with the life of someone you love like that. I long ago resigned myself, happily, to adopting. Even as that possibility looks bleaker and bleaker, because of my health & financial difficulties, I can't fathom taking the chance of putting a child through that just because I want to be a mother. It just seems too selfish, knowing everything I know.)

So, if it was that bad, how did I end up in such denial?
I was doing well before I got sick. I was on antidepressants, and things seemed to be well under control. I remember, when I first realized the gravity of having Fibromyalgia, and the uncertainty of what it could mean to my life, I decided, I just couldn't afford to be depressed if I was going to fight it, so I made my mind up to be positive above all. can be positive all you want, but that doesn't mean an illness is going to go away. And being positive? Hmm, funny how closely that resembles being in denial after a certain point...
Also, people mistake being depressed for being negative. Of course you're going to be depressed if you're a negative person, right?
Well, I think I'm a pretty positive person. The problem is, when I'm depressed, my chemicals go all crazy. You get to a point where you just absolutely can't find the silver linings. Can't be grateful for what you have. Can't climb out on your own.
It's a lot like Sylvia Plath's Bell Jar. Only for me it's like being inside this black brick box. I can't get to the happy thoughts. I'm suffocating back there, inside the black box. I know the happy thoughts, the happy place, is on the other side. But it's sooo dark it suffocates, I can't even make out the outlines of the memories of them, and the wall is so tall you can't see the top, so you just sit down by a wall and try to breathe, to hang on for another moment, another hour, another day, trying to keep from losing your grip on wanting to be alive, and if a crack should open up in the wall, you sit right so the light hits you, and start doggedly pounding away at the wall for a bigger hole. But it's a a really thick, brick wall...all around. Sometimes it goes away, but it doesn't take much for it to come back when you're already low.

You wish someone would come and help you, but you feel guilty, because you know the darkness is toxic, that it almost seems to rub off if they're not careful, and besides, hardly anyone has ever tried to help. It's like the darkness repels, repulses, and you're there, feeling alone and dark and damaged, and wary of even asking for help from anyone who isn't paid.

So I guess my point is...denial is a bad place, and even if you don't have a history of chronic depression, if it's a new thing, treat it.
It doesn't help matters any to try and be a tough guy.
(I know I don't look forward to adding another pill to my collection, but...)

I'm sure the holidays wouldn't be hitting me so hard if I hadn't waited so long to get treated for my depression. Just because you don't hear voices or see things that aren't there doesn't mean you don't have a serious illness, and a responsibility to yourself to take care of it. I guess I should know better. I'm just so worn out...

I've made an appointment to see an M.D....Not till January though, so I may have to find another doctor who can see me sooner. For now I'm upping my 5-HTP (which seemed to be helping, until I ran out for a week, seems like the story of my life lately!) maybe I'll see how much a bottle of St. John's Wort is...I'd much rather be taking something I'm familiar with and under the supervision of a doctor.
In the meantime, I guess I'll just keep fighting off that box the best I can.

Sunday, December 21, 2008

Getting Better

Well, Things are improving. My heart rhythm has normalized. Only two short episodes yesterday, and one today.

I had an unexpected little windfall, and got to go do a little Christmas shopping for those who are nearest and dearest. That made my weekend. It probably sounds a bit trite, but I really don't even mind that much if I don't get anything, it's the giving I love.

It seems I'm also going to get to do the Christmas Eve thing after all. Should be nice, I miss those peeps. Though I do have a bit of anxiety over the whole inevitable what have you been up to routine. Hmm. Well, nothing much...just being sick, losing my apartment cuz I can't work enough to make a living, getting sicker, having to move to another county with my Dad in a Senior Community, away from my newly constructed life, and then getting even sicker...Yeah, that one's definitely TMI.
The other strategy is to go with as much vaguness as possible, and/or whipping out my silver linings and highlight good sounding half truths and let you assume it's all good cuz that's what you want routine, lol.
Ah, life with chronic invisible illness...

The Fog has been kicking my butt this weekend. I couldn't seem to figure out why, what was different, it had been so much better for awhile there. Was thinking maybe the antiviral. Or maybe cuz I stopped taking some digestive enzymes I ran out of?

Then I realized, I took some Gabapentin for my cramps last week for a couple of days. Nothing else was touching them, even my normally low blood pressure was high (I'd never seen it high!) so I decided to try some Neurontin, cuz I was getting desperate, and VOILA! From one moment to the next, the nagging pain was just GONE. It was such an amazing moment. I'm not sure I even realized how bad it was until it was gone, and then suddenly I could breathe normally again and relax, it was like a weight had been lifted. Now I'm pretty positive it's that whole central nervous system pain sensitization deal, there was no reason for that much pain. My body's just blowing it outta proportion firing away w/the substance P or however that works.
But yeah, Gabapentin does a NUMBER on my brain function. I swear, today it was like I'd lost like 40 IQ points or something. I spent an hour trying to keep straight how many presents I needed for who, and they were all the same thing, only like 5 of them, just different colors! And as for making decisions? AHHHHH!!!!!!!

Oh, that reminds me of something I've been meaning to write about: The prevalence of Endometriosis in women with CFS & FM. I've seen figures as high as 50% of all women with Endo having FM or CFS as well. Interesting, huh? Even more interesting, my doctor, who believes a virus is at the root of CFS, claims that the viruses attack the male and female sex organs...
He asked me if I was sure I had Endo, I told him that's what they told me when they did the surgery to extract it...he went in and read the surgery report to me, and lo and behold...the wording the surgeon used seemed to intentionally avoid positively confirming that what she'd found was definitely Endometriosis! I thought that was pretty trippy.

Here's a related article:

Next time, I'll be blogging about my lust for electronic PT Type gadgets...I totally wasted some time, with feet killing me and exhausted, lusting over a vibrating neck heating pad (shoulders/neck KILLING me when I'm on here lately) and massaging slippers...Ah, to dream, perchance...

Saturday, December 20, 2008

Help for Heart Palpitations?

Last night I was getting pretty fed up. I'd tried taking a 1/4 mg of Xanax, because that seemed to help before, but not anymore. (I think maybe it just helped ease the stress and anxiety I was feeling because of the palpitations not going away.)

Anyhow, I ended up taking some stuff I had around that I remembered was supposed to be good for the heart: Magnesium (supposed to help regulate rhythm) D-Ribose (shown in studies to help with all kinds of heart problems, including Atrial Fibrillation, a problem my father has that I had researched) Potassium, L-Carnitine, and I even found some COQ-10 leftover that I'd thought I'd used up.

WELL, half an hour later or so, my heart got back to normal! No more pounding, or erratic rhythms! Not positive that's what worked, but I'm totally taking it again today...

Friday, December 19, 2008

Another Tough Day

I'm so frustrated with these symptoms. Today, I slept until the phone ringing woke me up at 12:30! Even for me, that's a bit much. I must've been tired. And this is the one day I have nothing scheduled, so I wasn't worried about it.

I got up, made something quick to eat, came to check my e-mail & Facebook, checked out some new articles from the NFA, and that's about all the time I had, an hour or so, before I felt my body telling me I needed to get horizontal. It just seemed like too much though. After an hour? So I resisted the urge to lie down and kept doing stuff. My reward: a racing heart, more heart palpitations. After checking my BP & pulse and finding my pulse was 118, I decided to lie down. Besides, my shoulders were burning w/discomfort already too, calling for my heating pad, or massage pad (but that involved my sitting up, so I went w/the heat).

So frustrating. I put on a show, commercial free of course, because otherwise I'd zone out during the commercials and start thinking too much or thinking of things that needed to be done. But it didn't make a difference.

I got to thinking about Christmas. I feel so left out of it all...Yet another year with no Christmas tree, no Christmas shopping, no opening the presents at midnight Christmas Eve surrounded by family, seeing their faces when they see what you got them, or dancing until late in the night. Hell, I'd settle for watching people dance until late in the night. Just to be around that kind of happiness would be nice.

I start thinking what I could do, and problem solving mode tells me, Well throw your own party! Oh wait. Broke. Have hundreds of dollars of medical bills I need to pay, and can't even do that.

And THAT is the main problem. Money. I've tried as hard as I could to work around my illness, but I can't keep it up. This last week alone, I've spent every day either doing something; running crucial errands, going to appointments, or in bed, trying to rest this thing out. I keep thinking there has to be a way to fix it all. I'm already doing the best I can though.
I just keep encountering one roadblock after another, and my mind & my spirit are worn out, sometimes it feels like I can barely think straight anymore, and my emotions are bossing me around, I just don't have the strength to summon up to be strong and sensible and stop the negative thought patterns. Two years ago, I could manage to pull the silver linings out of anything...but they seem to be all used up.
I've just about used up all the hope I had in me it seems. I don't believe next year will be any better, that hasn't worked in too long.

Well, I got a good useful talking to and managed to stop thinking so much, and things didn't seem as bad. I'm still torn though. Part of me is half convinced I should get over not feeling well and do something to either make some money, or at least get out and spend some time in the outside world. If that makes it worse, then the bright side is, I may finally have proof convincing enough for the government to believe I'm ill enough for them to help me. But on the other hand, I don't like people seeing me ill.
I remember one of the last Christmases I had that was good, shortly before I had to quit working full-time, I'd been going downhill for weeks, but I'd met this guy, and was really into him. So when he asked me to go to the mall with him, and help him do his Christmas shopping, I totally said yes. I was exhausted, but I had been for weeks, so I just pushed myself, but I guess all the makeup and the cute clothes didn't hide it. I broke out in a sweat and I guess I was probably pretty pale, honestly, I think I was having trouble catching my breath too, but wasn't saying anything. He noticed though, and made me sit down, was very concerned. I just said maybe I needed to eat, and he got me some food, and I think took me home after that. It didn't end well.

Ha. Maybe that's why I'm not too excited about dating these days. And my answer about trying to push myself. So much guilt with these illnesses. It seems so ridiculous to get so tired so easily...Worse, when no one seems to see that you need a helping hand. It's like being in purgatory. So torn between what to do. Always second-guessing myself. I've gotten better, but it's still hard. I had someone tell me today I should try exercising. Right. My heart is all whacky, I keep getting tired for no reason am in pain and having an overwhelming urge to lie down and I should go jump on a treadmill? It's enough to make you want to do it, just to prove that it was a bad idea. But really, I'd be the main one to suffer from that.

So anyways, I had been doing better with the not thinking so much stuff, really!

This is so definitely a rant.

Maybe if I'm good, and rest, and stop thinking, I'll be well enough to celebrate New Year's. I think that will be my happy thought. Haven't been to a good party in awhile...

Off to watch yet another episode of Fringe. It's my answer to the demise of The 4400. Thank bro.

CFS & Viruses

Found this great link to an article about CFS & Viruses, an interview w/Dr. Chia.

Also, an article about Oxymatrine:

Unfortunately, it looks like I may have to change the name of my blog...

Wednesday, December 17, 2008

Sometimes a Chick with FM just has to get thrifty!

Feeling bad lately because I'm running up the electric bill. I was so happy that summer was over, because I feel really rotten in the mornings if I wake up and it's too hot. It's like I'm swollen or something, groggy, uncomfortable, and in slow-motion, takes a long time to wake up. So the brief Fall weather was perfect, I started practically hopping out of bed! It felt so good!

(I recently read an article about MS and heat intolerance that describes a lot of what I've been experiencing. Finding an interesting number of similarities between FM/CFS, & MS, except the life threatening part.)

Unfortunately, Fall was much too brief, and now with the fast approach of winter, even here in California, I'm finding that mornings are getting rough again. I feel myself get all stiff and achey just about as soon as I leave my bedroom, and am finding it a lot harder to get going. Turning the heat on helps tremendously...but I'm not the one paying for it.

So anyhow, I already knew about the Universal Lifeline Service for phone service. I pay about $7 a month (albeit w/o long distance).

I decided to look up something to help with Electricity, and found two programs:

This one is called CARE and is an income based discount, which I should be able to get:

This one helps people w/special conditions, mainly who need special life support devices or have specific medical conditions or are immunocompromised. I think I might be able to manage that last one. Worth a try. Also worth noting, since many w/FM have Sleep Apnea, that would qualify you too.


1. Regular use in the customer's home of one or more medical life-support devices essential to maintain the life of a full-time resident of the household; and/or

A full-time resident of the household is: a paraplegic, hemiplegic, quadriplegic, multiple sclerosis, scleroderma patient, being treated for life-threatening illness, and/or has a compromised immune system.

These are in California, but I'm sure they have them in many other states as well.

Friday, December 12, 2008

A Bump in the Road

Warning: This will probably not be a cheery post.

I had a pretty good couple of weeks. My head was clearing, the fog was retreating, I had more and more hours were the invisible barriers that sometimes seem to plague my existence were gone. More energy. A life I could live with seemed right at my fingertips, I could touch it but not quite grab it, and I wanted to do as much as I could to make up for months of business not taken care of. I knew it wouldn't last, but that doesn't make it any easier.
That's the kicker with these illnesses. If I were forever miserable, or lost a limb, I think I could learn to cope with that, maybe even overcome it; it's a constant. But going from good to bad at any given week, day, hour, or moment, that is the challenge. And it messes with your head.

That's what's getting me down right now. I'm a problem solver by nature. But I can't seem to adjust and figure this one out. I so would love to be one of those inspirational chicks who lives well with chronic illness. Sometimes, I wonder if maybe they had it easier, in that they had their illness to contend with, but everything else wasn't falling down around them. If that was it, I think I could finally be happy. If I knew I was safe and ultimately would have people to count on to watch out for me if things got too bad. But I don't feel I have that. I'm still in survival mode. (Granted, one never knows what really goes on in other people's lives, we see what they want us to see much of the time, and I'm by no means trying to diminish their success.)

So days like this, it takes all the strength I have not to go unhinged.
I'm exhausted. I barely slept last night, was woken up by heart palpitations. One of my most feared symptoms, are the cardiac ones, because even though I have an idea what causes it, and I know I'm not alone, most doctors don't. Days like this I spend torn between going to the Emergency Room, and telling myself nothing bad has come of it yet and I should just ignore it. Until, like now, it's definitely time to sleep, but when I lie down there's nothing to drown out the pounding of my heart.

See, I've been to the hospital about 3 times for this type of thing. Once by the time they saw me, it was better (though it came back later, but I wasn't about to go back to wait in the ER again, I was exhausted, and the chairs at county, and sitting for long periods are not Fibro-friendly) another time, I went and they did tons of tests and found nothing much wrong. The one time they seemed alarmed and took me seriously, all they did was temporarily fix it by dripping a saline IV into me for a couple hours and refer me for a test that was done incorrectly and was pretty distressing. (Try hanging upright on a table for 45 minutes w/people staring at you waiting for you to faint, then pumping you w/some drug to try it again, having your heart wig out, next thing you know it seems the doctor is trying to choke you with his hands on your throat digging down into your clavicle so you don't know what will kill you first, your heart and the not being able to breathe, or the doctor who seems to have gone mad but is really performing carotid artery massage to get your heart pumping normally again...)

The idea that I might go and they won't find anything and I'll run into a doctor who still thinks FM & CFS aren't real and that I'm a nut helps keep me home. I'm still bruised from a recent emotional upheaval, and not up to attempting to educate doctors.

I took some medicine, not specifically for that, but meant to address the CFS in general, and it seemed to help, which was very heartening. But it didn't last, and my next dose isn't for hours. I contemplate calling the answering service of the doctor who prescribed it and seems to be able to connect all these symptoms, to get his opinion, but I'd feel bad waking him up, if they even do that...

I'm so exhausted, but if I lie down, it's harder to ignore and it's hard to keep it from freaking me out. It seems different, too. Usually my BP is really low, and my pulse is racing. This time it's just pounding and occasionally the rhythm feels off.
My soul just feels so weary of all of this. Tired of fighting one thing after another. One day to breathe, another to be upright, another the fatigue, or pain, my brain feeling like a pretzel, or just attempting to overcome all the problems that come with not being able to hold a regular job, and having a condition the SSA is extremely skeptical of.
And then come those blessed good days that I'm so grateful for and make me forget the bad ones; until they're over, and the change isn't always gradual, sometimes it just hits you like a pile of bricks and it's like,
"Wait! What happened?"

All I want is to be able to make a living, be reliable, feel like a responsible, dignified, halfway normal adult again, have confidence that I can take care of myself, and move forward with my life and be happy. It really doesn't take a lot to make me happy...I reach out and grab happiness when I can find it, usually, and hold on tight.

I've been considering, and a dear friend today reminded me that there is no shame in taking anti-depressants. But I've been fighting having to add another pill to my array of meds and supplements, especially one that if I run out of will leave me with little electric zap reminders to the brain, tingly lips, and slight episodes of vertigo and the sensation of being off somehow, in its wake. I haven't even been that depressed lately, it's just the emotional rollercoaster...I'm a pretty emotionally sensitive person, and I've been through hell these last couple of times, it could be an asset to feel things so deeply, but right now it seems like just another thing exhausting me, and I wouldn't mind getting off that ride for a bit.

Alrighty folks, my heart seems to have settled down for the moment. Maybe I can sneak off and go to sleep before it realizes I know...Shhhh... ;)

Oh, and any tips from anyone with experience with ,these kinds of symptoms would be greatly appreciated. I know you must be out there, somewhere...

Tuesday, December 9, 2008

Insurance Barriers to Fibromyalgia

I saw this at the blog, but I thought it was too important not to pass on:

Survey on Insurance Barriers to Fibromyalgia

From the American Pain Foundation:

"Insurance Barriers to Fibromyalgia

Inappropriate barriers created by insurance plans for pain coverage is a growing concern for individuals living with pain, their loved ones and caregivers. APF is aware of unfair delays in coverage due to unreasonable policies created by some insurance companies that you, your family or your employer may not be aware of. In order to better understand and serve you, we ask that you complete the following survey. This survey is geared toward those with fibromyalgia as a special focus."

I know personally, right now, I would be getting physical therapy if I possibly helps get and keep pain under control, cuts back on pain meds, improves quality of life, and in the end saves my insurance money! But it's not considered a regular office visit, so I'd have to meet my $2,000 deductible first, and then only have 80% covered...

I'm hoping something will be done to move us towards universal healthcare in the near future...

Milnacipran Shows Success in Treating FM?

Milnacipran is the name of a new drug being tested for Fibromyalgia. It is actually an anti-depressant, of the SSNRI (Selective Seretonin Norepinephrine Reuptake Inhibitor) type that has been available in Austria for a decade.

According to the study at the link below, it has shown success in treating symptoms of FM, as well as Lupus.

After reading the study however, it occurs to me that this is just another Cymbalta. This may sound a little jaded, but it seems to me, that the drug companies are just looking for medications to throw at FM,so that they can make money off the millions of people who suffer from it. This isn't a may help some,especially those suffering with depression as well as FM, but not all, just as Cymbalta did. (Note that Cymbalta was recently NOT approved for treating FM in Europe.) All it does is tinker with a couple of neurotransmitters, and although these have been found to be off in FM, they are not the cause, just two more of the myriad of symptoms.
Sure, it might help people with FM, improving quality of life by improving mood and outlook, and having a slight effect on pain, but we have plenty of drugs like that already; we don't call THOSE "FM Drugs"... It just makes me wonder if this title should be given to any drug that doesn't help everyone, or nearly everyone who suffers from this disease. (Insulin wouldn't be considered a diabetes drug if it only helped some people who had diabetes, right?) To be precise, it does say "for the Management of Fibromyalgia" but no doubt it will be touted as a drug for treating FM. I can see the commercials now...
If it helps some people, that's great, but I kind of wish they would focus more on finding the cause, or at the very least a surefire diagnostic test.

Just my two cents.

Here's a link to the study: Positive-Results-of-Phase-III-Study-of-Milnacipran-for-the-Management-of-Fibromyalgia-3573-1/

*Correction: I actually got the Lupus link from this site, under Experimental Uses:

Saturday, December 6, 2008

New Issue of Fibromyalgia Aware Magazine out

This really is an impressive publication. I had never gotten a chance to have it until I got some cheap at a support group this year, but now that I've read it, and see how see the quality of the research and articles in it, and how well it addresses the reality of living with FM, I will definitely be saving the few buck for it. It's my understanding they sell them at CVS stores. Check it out this is some info on the latest issue:

from the Site:
The National Fibromyalgia Association has released the newest issue of Fibromyalgia AWARE, the first and only consumer magazine dedicated to the disorder. The issue (Winter 2008 Vol. 18) includes a special section on fibro-friendly exercises.

Featured stories in Vol. 18 include:

* Effective Skills to Relax the Body
* Guidelines for Stretching
* Gentle Body Movements
* Growth Hormones & FM
* Lyme Disease and FM
* Finding a Support Group that’s Right for You
* Research Explores Causes of FM
* Dealing with FM-Related Suicide Thoughts
* Choosing the Right Shoe
* And more

See full text here:

Thursday, December 4, 2008

One of those days...

Wow. This week had been so good, energy-wise, but today, it's just GONE. No energy. I mean, I can't get myself to take a shower, wishing I had a waterproof chair, then, maybe. I can't remember the last time I suffered from this lack of energy. But then, I tend to banish the bad from my memory as soon as I have a good day.

The only thing I've done differently today, is not have any Green Tea. I'd been drinking some in the mornings all this week. Actually, I've been wondering if maybe that has been what was hyping me up so much this week. I am super sensitive to caffeine. (Decaf is more than enough caffeine for me.)They say the Theanine in the Green Tea should counteract it, but I'm not buying it.

And if it IS the absence of the Green Tea, maybe it's good I not have it, because nights were getting tough, I've been so mentally revved up I keep pushing myself way past the boundaries of pain and discomfort and fatigue. So in the end, it's probably the cause of this exhaustion.

I did have a champagne cocktail with dinner yesterday that wore me out, but I don't think that's it. (I'm pretty much intolerant to alcohol lately. Before, it used to energize me, and relax and numb my muscles. Now I seem to get these awful leg pains every time I drink if I don't have some Potassium and Magnesium afterwards, not to mention get extremely tired.)

Well, I'd better go save up some energy for that shower...I have someplace to go tonight...not sure I'm going to make it at this point, but I've been looking forward to it for weeks, and since I didn't really go out for my b-day last night...

New report says Gulf War illness is real

If there's anything worse than having a chronic illness nobody understands, I would say it would be having served your country, getting sick, and having the government tell you it's not real, not the government's problem, and having them wash their hands of you.

For that reason, I was really happy for anyone with Gulf War Syndrome when I came across this article.

Finally, the government fesses up:

Stress-Free Holiday Shopping Links and Freebies!

I just added a "Stress-Free Holiday Shopping" section to the sidebar on the right, PLUS, ProHealth is giving away a Free 10-Day supply of their FibroSleep supplement!

Free 10-day sample of FibroSleep from ProHealth. Only pay $2 S/H! Act now, supplies limited

Pro Health isn't just about supplements, they've got Air purifiers, Saunas, DVDs, CDs, Books, and Bath things.

ProHealth Holiday Gift Guide - This one isn't free, but the products ARE 50% off!Order by December 17th for holiday delivery.

Save 20% on Cuddle Ewe underquilts, sets, and Travel Ewe. Order by 12/12 for holiday delivery. Expires 12/31.
Cuddle Ewes for 20%

Here are some links to Amazon as well:

And of course, the easiest of them all, the Gift Card:

Wednesday, December 3, 2008

ProHealth Sponsoring Chat with CFIDS Association Director

Join a Live Chat with ME/CFS Research Expert Dr. Suzanne Vernon

ProHealth invites you to join a Live Q&A with Suzanne Vernon, PhD - Scientific Director of the CFIDS Association of America, "Working to Translate Science to a Cure
for CFS."

The Time and Place:

Friday, December 5th, at 3 PM Pacific Time in the Community Chat Rooms.

The Subjects:

Breaking news about the exciting & unprecedented ME/CFS research program Dr. Vernon has selected for CFIDS Association funding in 2009. Plus almost anything you'd like to ask about the "state of the science" current & future, in terms of CFS causes, diagnosis, and treatment. read more

**News of the Research program actually broke today: Read it Here
(Personally, I was too tired to make much sense of it all, except to get that they will be looking for Biomarkers to more accurately be able to diagnose CFS. Not the cure, but at least proof for the doubters still out there, and entities like the Social Security Administration.)

Also, you can take advantage of this deal if you see a supplement or product on their site if you like:

$10 Off Purchases of $50

New Research - alpha1-Antitrypsin and Fibromyalgia

Some of the most interesting research I've seen in awhile...

A little complicated to read, especially w/Fog, but some of the key interesting points are that they think there's a genetic disorder causing problems with this protein; that they've treated people with this protein; and that they've found a little fibrous nodules in the muscle, which I know many of us have to different degrees.


Alpha-1 Antitrypsin Deficiency

FMOnline vol. 8, no. 9

A recent study published in the Journal of Musculoskeletal Pain looked at deficiency in the protein alpha-1 antitrypsin in people with fibromyalgia in 10 countries around the world. Severe deficiency was found in all 10 countries, with very high frequencies in Denmark and Sweden. Patients from the United States showed this deficiency at intermediate frequencies: one in 11 people, or 478,681 people.

The lead author on this study is Ignacio Blanco, MD, of the Department of Internal Medicine at the Hospital Valle del Nalón in Langreo, Spain. Dr. Blanco wrote a piece on alpha-1 antitrypsin and fibromyalgia for vol. 16 of Fibromyalgia AWARE.


This article was originally published in FMOnline. This free online newsletter is only available to registered members. Click here to register!

Here is the full article, from the Fibromyalgia Aware Magazine May-July 2008 issue.

and a Google Books link to the research as well:

New Research on Fibromyalgia

I knew I wanted to visit Spain!

Tuesday, December 2, 2008


I wonder if it's an FM thing to have such a hyperactive mind.
So many times, I'll be utterly exhausted, but for the life of me, I can't wind down. Can't shut off my brain. Especially today, that I felt well enough to accomplish a lot of little, but important things. (Phone calls! Me! I made several! It really is the fog, now that it's lifted it's ever so much easier.)But I can't seem to be happy with all those accomplishments. I'm stiff, I hurt from sitting here too many hours today, but I can't quit thinking of things I could do. I've tried everything, anxiety medicine, my nightly muscle relaxer, TV, heating pad...I even snacked on sweets. (Not recommended, unless you get to the gym!) And then protein and veggies.

This is why I love having a good, new DVD handy. When I get like this, even watching a show I love, commercials come on, and I'm up doing something "just until the commercial is over". Not.
I have a feeling even that wouldn't work tonight. (BTW, the 2nd Chronicles of Narnia, Prince Caspian, is out! How I love me my Narnia!)

What to do, what to do...Might be time for some stretching (even though my creaky body protests at the very thought) and/or some. Holosync. Have I mentioned Holosync yet?
It's a nifty audio-meditation program. On my list of things to get when I'm no longer broke. (Ah! one day.) For now I use the demo CD, which you can get free at .

It really is free, and it really does work. You're not supposed to do it lying down, but I always have, and it has helped remedy many a sleepless night...I always snap awake right when it ends, but if I hurry and get the headphones off, I can usually get right to sleep.

Okay, well that's all for today. Tomorrow should be a good day! I get to go have a birthday lunch at a fabulous-sounding little French Creperie/Cafe! And I'm going to get me some Chinese Red Bean Buns! (Sounds weird, but good stuff, trust me!)

Find a Live Support Group Near You!

NFA Support Group Directory

Search for Fibromyalgia or Chronic Fatigue Syndrome Groups

P.S. ~ The best support groups in my experience, are the ones that have educational seminars, or some kind of speaker or activity set up. You will have the comfort being amongst those who understand and don't mind if you bring pillows, have to stand up, or take a break,while learning something that you can use to help manage or better treat your illness. And you can meet people to connect with on a more personal level and discuss your experiences with!

Monday, December 1, 2008

A Good Day

Today was a good day. I was feeling pretty good from the getgo. The Cognitive Dysfunction has for some reason, gratefully, been dialed down. Yes, I forgot how to give directions from the beach to here, which takes all of two streets (I swore there was a street in between, and couldn't remember it) and I forgot to mention my unit number in giving out the address, but as far as having my brain feel like a tightly twisted, cramped up pretzel, well, definitely some respite from that!

I had someone I barely know offer to do a very nice thing for me, taking me to a doctor's appointment, and then we drove around, had some grub, chatted, and saw a movie, and I got to see parts of OC that I either didn't know, or that were twinged with a veil of nostalgia for me, places that I hadn't seen in forever. All in all, it was a pretty great day, and it just goes a long way in reminding me why it's so good to try and get out and lead at least as normal a life as possible, insofar as being around people. I like to call it "being part of the world", because for such a long time after I got sick, I lived in a place where I had hardly any connections (aside from immediate family, which in my case can be toxic in high dosages) and sure, I would get out to run errands and things, but I felt like an outsider, set apart, watching the people go about their business, couples holding hands, mothers with their children, women with their girlfriends, people running into people they knew... Very normal, mundane, everyday things, but things that I did not experience, because I didn't grow up in the area, and I didn't have much of a chance to get to know people before Fibromyalgia felled me, keeping me from my co-workers, and out of the social circles I had, many of which were in other cities. (With gas as high as it was, as well, it became almost impossible to travel, even if I WAS having a good streak.)

When I lost my last job, I made a conscious decision: I was going to have to untie my identity from work, disentangle it if you will, and find something else to give my life meaning, purpose, and joy. I realized that the key to this, was creating a social life, surrounding myself with friends, and a sort of family (hopefully less dysfunctional and more supportive than my real one) to occupy my time, give me joy, laughter, things to do, and to offer the gifts I had to give as well. I finally realized that my stubborness in repeatedly insisting on returning to work was doing me about as much good as banging my head against the wall, which really, was very silly, because I wasn't making enough to live off of anyhow, and I was just setting myself up for failure, and at least as bad, letting down the people who depended on me at work, pretending everything was fine, when I could barely get from day to day.

I thought I came to this realization in time, but it was still a tough blow, and I was already weakened and off kilter from the extreme stress of trying to hide my Cognitive Dysfunction and otherwise compensate for my deficiences at work. I ended up in bed, as sick as I'd ever been, with weakness, chest pain, trouble getting air (not asthma) heart palpitations, low blood pressure that dipped whenever I so much as got up from a sitting position, resulting in near blackouts that left my head pounding every time. (Which I know now was Autonomic Nervous System dysfunction, trust me, it may sound like anxiety, but I know anxiety...) I was terrified, so much so that I was willing to forego the comforts of home and stay with my parents in their cramped little apartment for two weeks. Giving up my little part-time job was a blow. But not knowing if this was a passing thing or if I, like many FM/CFS patients before me, would be like that for months, and not knowing how to find the help I needed (Western Medicine failed me miserably that cardiologist told me what I needed was exercise, which, as weak as I was, losing electrolytes like crazy, and as my holistic doctor later proved, with some major balance problems) left me feeling helpless, and very depressed. (Another cardiologist, doing a tilt table test, nearly put me into cardiac arrest after injecting me with a drug. Next thing I knew, I couldn't breathe, was seeing red, my heart felt like it was about to explode from my chest, and it seemed to me, he was trying to choke me...turned out to be carotid artery massage. He didn't finish the test, or explore why the drug had that reaction on me, just declared the test negative, despite my extremely low pressure, and it dropping even lower at the begining of the test. Much later on, I would find out he hadn't followed the protocol correctly, and when my doctor called to ask him how the test could be negative if it hadn't even been completed, he responded that he was a CARDIOLOGIST as if this alone excused him from having his verdict challenged.)

But I came back, with the help of a wonderful holistic doctor who gave me the luxury of credit, and his careful, caring expertise to nourish my adrenals, provide the correct nutrients, correct my metabolism, and gently manipulate my spine to take care of the rest. And then I slowly set about putting the wheels in motion to create a life worth living, and figure out who I was if I wasn't the overachieving, hardworking, materially succesful young woman I'd had every intenion of, and was on the road to being. And that's where I was 6 months ago, content with the much fuller life, although still putting up enough of a front so most people would see something acceptable: a healthy, vibrant, intelligent young woman taking the road less travelled. At home, I nursed the overexertion (this time, without any choice, my financial straits were dire) grasped at anything to keep me from losing my home, and jumped through a million hoops to get medical care, medications, and any other help I could find to keep me afloat. I was exhausted, but at least having friends to call up on Friday nights and go blow off steam with helped replenish my spirit.

Then I moved, and even with the best of plans, the exhaustion seemed to catch up all at once, and life started unravelling. Soon the walls of isolation began to close in and enfold me so deeply that I thought I would suffocate, but inversely, the world outside just seemed too overwhelming and I found it hard to imagine a place in it for me, until lately. Lately I've begun to venture out again. I've been to a couple of support groups, and that has been wonderful, because although I had tried to socialize with people my age, I ended up confused and overwhelmed trying to decide how to present myself, what to reveal, or not. I desperately wanted them to believe I was one of them, the thought of letting them in on an inkling of the truth terrified me. And I think this signified that I was still in denial. Some people might say that sharing that I have a chronic illness with people I've just met might be TMI, but it's such hard work, especially when the Cognitive Dysfunction is at work, keeping up the facade is extremely difficult. And when just getting yourself out there at all takes such effort to begin with...
Well, eventually, I hope that I will be strong enough to completely be who I am to "normal" people. I will be able to say to tell people what I struggle with when relevant, and even let them see it, something I have major issues with. (Put me in pain, exhausted, or otherwise ill in a social situation, with no access to pain pills and no way of escaping, and I have been known to freak out. It's not in my nature to showcase my weakness, sometimes even talking about it is easier, but having witnesses...)
And if for some it's too much to deal with, that sucks, but oh well, right?
I look at pictures of me with friends, and I understand how the dissonance of those images and the reality of my life, so it would be hard to blame them. I look for things that bring me joy and laughter, and when I find them, I grab them by the horns and hold on as tight as I can, and that shouldn't warrant any excuses. Plus, I can't spend my life feeling like I have to prove that I'm sick. I have enough work, right?

Fibro in itself may not be my life, but it permeates it. It's unpredictable, always changing, takes loads of mental energy just to manage because you must always be planning ahead for the scenarios that may impede the activities of day to day life. Each day from the moment you wake up, it takes will power and effort, and consciousness of it is inescapable.

And that's why having people who understand because they are living the same battle can be such a gift. If you even have to explain something about your limitations, at least you know that they understand, even if their experience has not been identical, there's not that frustration of trying to communicate something that someone healthy may never (through no fault of their own) understand, or wonder whether they are sizing you up, and judging whether or not you're crazy or exaggerating or seeking attention, or if they can see past the image you are so carefully presenting to them, the nice dress, carefully done makeup and hair, etc., because it's one thing you can still do feel like a normal person...and even that works against you. (Not that it can't work for you too, of course!)

So I encourage all of you, and anyone with any life-altering chronic illness, to get out there, find a support group near you, check, and if you can't find one and you're up for it, consider starting your own! The Internet is a great place to find a network of supportive people, I would never give up my Internet Fibro Friends, who have shared my day-to-day trials year in and year out, and victories from afar when this was all the world I had, but being around real, live people and feeling like "part of the world" seems to me to have a whole other slew of benefits. Even a "normal" human being cannot thrive without human contact!
And for you normals out there, if you want to help, don't forget, it's all about the little things. Just stopping by to say "Hi", to go for a drive, or hang out and watch TV can be enough to make those suffocating walls retreat and help a friend or loved one realize that they are indeed, " part of the world"!