Wednesday, December 31, 2008
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!)
Tuesday, December 30, 2008
Curcumin [turmeric] as a promising antifungal of clinical interest - Source: The Journal of Antimicrobial Chemotherapy, Nov 26, 2008
Sunday, December 28, 2008
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
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 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
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.
Well...you 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
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
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
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.
Also, an article about Oxymatrine:
Unfortunately, it looks like I may have to change the name of my blog...
Wednesday, December 17, 2008
(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
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 years...at 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
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 could...it 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...
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 cure...it 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:http://en.wikipedia.org/wiki/Milnacipran
Saturday, December 6, 2008
from the FMAware.org 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: http://www.fmaware.org/site/News2?page=NewsArticle&id=8073
Thursday, December 4, 2008
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...
For that reason, I was really happy for anyone with Gulf War Syndrome when I came across this article.
Finally, the government fesses up:
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 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
The Time and Place:
Friday, December 5th, at 3 PM Pacific Time in the ProHealth.com Community Chat Rooms.
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:
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
Friday, September 19, 2008
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:
I knew I wanted to visit Spain!
Tuesday, December 2, 2008
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 http://www.centerpointe.com .
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!)
Search Meetup.com 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
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 time...one 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 Meetup.com, 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"!
Sunday, November 30, 2008
Hard to believe that just a year ago I was allergy-free. By January I'd become allergic to my cat, dust, indoors, outdoors, was having constant asthma attacks, and was taking 4 medications to help manage it all. And they weren't helping. Well, it seems at least the anti-histamine helped get the asthma under control, but my sinuses were still very unhappy.
That's how they feel today. Kinda like someone took my nose, smushed it, and put it back. Very uncomfortable and not well-suited to breathing, if anything, a hindrance. It hurts, and the sinus headaches are threatening.
I was getting it well under control with the wonderful supplement I may have mentioned before, a mixture of Turmeric, Ginger, Quercetin, Enzymes, Vitamin D, and Green Tea Extract. (I was taking it mainly for the Quercetin and Enzymes, the Quercetin helps block the histamine response, while the Papain thins mucuous secretions (kinda like the evil Guaifenesin) and along with the Bromelain, digestion and a bunch of other things I can't remember more relevant to allergies. The Turmeric, a fabulous anti-inflammatory, anti-oxidant, anti-cancer herb also helps remove plaque from the arteries and brain, as well as blocking central nervous system sensitization. Ginger is an anti-inflammatory and good for the tummy as well.)
Unfortunately, I ran out of it, ordered it online from the mail-order branch of my favorite health store, and it's taking forever to get here. I'd been doing so well, too, hadn't had one of these days in weeks.
Oh well, hopefully it will get here tomorrow, if not I'll just have to drive the hour to go get it...
Anti-histamines and my trusty pseudoephedrine (which I always found a miracle drug for the occasional sinus headache, but taken daily seems to make me nervous, edgy, and cranky) just aren't cutting it...
Saturday, November 29, 2008
I thought this was kind of a cool article for making that distinction, because I know with me at least, I don't get sleepy usually, unless I've had VERY little sleep. I get exhausted, like I need to rest, but even if I want to, I usually can't fall asleep. It's like some CNS overstimulation is going on, and it's hard to turn the brain off. My mind is hyperactive even when I'm dead tired.
Are patients with chronic fatigue syndrome just 'tired' or also 'sleepy'? - Source: Journal of Sleep Research, Oct 7, 2008by Daniel Neu, et al.
November 22, 2008
It is presently unclear whether chronic fatigue syndrome (CFS) patients exhibit daytime sleepiness in addition to fatigue. Both fatigue, such as that seen in CFS patients, and excessive daytime sleepiness, such as in sleep apnea-hypopnea syndrome (SAHS), remain poorly understood. Both daytime conditions are generally related to unrefreshing sleep and show affective symptoms.
This study's objective was to contribute to the understanding of the relationship between fatigue and sleepiness in CFS patients not co-morbid for primary sleep or psychiatric disorders.
We compared 16 untreated CFS patients (mean age 32.8, all females) with 13 untreated SAHS (mean age 47.7, all females) patients and 12 healthy controls (mean age 32.2, all females).
Objective sleepiness was measured using multiple sleep latency tests (MSLT).
Subjective sleepiness and fatigue were assessed with the Epworth Sleepiness Scale and the Fatigue Severity Scale, respectively.
• Mean Sleep Latency (SL) on the MSLT was significantly shorter in SAHS patients than in CFS patients,
• And CFS patients showed significantly shorter mean SL than matched controls but within normal range.
• Subjective sleepiness was greatest in SAHS patients
• And subjective fatigue was highest in CFS patients.
• Affective symptoms showed highest intensities in CFS patients.
• While higher than the control group on all measures, compared to SAHS the CFS group had higher subjective fatigue and lower subjective and objective sleepiness.
Despite possible overlap in symptoms and signs of both daytime conditions, our data indirectly support the clinical distinction between fatigue and sleepiness.
Source: Journal of Sleep Research, Oct 7, 32008. Neu D, Hoffmann G, Moutrier R, Verbanck P, Linkowski P, LE Bon O. University Hospital Brugmann, Sleep Laboratory, Universite Libre de Bruxelles, Brussels, Belgium. [E-mail: firstname.lastname@example.org]
Well, writing honestly about Fibro tends to bring that out I guess. It's hard having an invisible, unpredictable illness that no one gets, and that has wreaked havoc on your life. But this blog is supposed to be about The Journey WITH the illness. Life, as a whole. And the freedom to be honest about the role FM/ME play in it. But not just about IT. There's more to it than that. More than the struggle.
I guess I'm afraid of coming off as pessimistic. That's not me. Things have been tough recently. I thought having a place to live in peace would make everything okay. But it turns out, besides leaving behind a life that took me a lot of effort and time to build, for the first time in a couple of years, I wasn't so busy trying to survive that I could ignore things undealt with, turns out they were just lying there, beneath the surface, waiting, and once I had a chance to rest, there they were. Actually, I think survival became my thing, and not having to drive myself so hard sounded great, but in reality, you get used to things, even hard things. Without having to or being able to do that, it was like getting sick and starting the grieving process all over again.
I'm not where I planned to be in life. I can't even pretend, like I did before I moved, that I have things under control. (The truth was, it was a shakily constructed facade, mostly for other people's benefit.) Things have been dark lately, but there are hours, sometimes days, where I again see the light and the world is good and full of promise and hope.
So hopefully, that will show through a little more in the future :)
Friday, November 28, 2008
So if you can, stay at home, and shop online! Save time, gas, and precious energy!
Check out my store for your books, music, and electronics! All from the comfort of your home.
Jennifer's Amazon Store
Saturday, November 22, 2008
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Wednesday, November 19, 2008
Autonomic dysfunction in fibromyalgia syndrome: Postural orthostatic tachycardia - Source: Current Rheumatology Reports, Dec 2008
by Roland Staud, MD, FACP, FACR
November 16, 2008
Although fibromyalgia (FM) syndrome is defined by chronic widespread pain and tenderness, additional symptoms, including disabling fatigue and dizziness, are often reported by patients with this chronic illness.
Although nonrestorative sleep may play an important role for chronic fatigue in FM, other mechanisms, including dysfunction of the autonomic nervous system (ANS), need to be considered.
Many important biological functions, such as heart rate, blood pressure, respirations, and bowel function, are tightly regulated by the ANS.
However, dysfunction of the ANS is common in FM and often becomes quite apparent after positional changes from supine to upright.
Although such positional changes sometimes result in syncope, they are more often associated with palpitations and dizziness.
Head-up tilt table testing can be used to evaluate autonomic dysfunction, and is frequently helpful for the work-up of FM complaints, including fatigue, dizziness, and palpitations.
One of the most common events experienced by FM patients during tilt table testing is postural orthostatic tachycardia syndrome, which is defined as a heart rate increase of more than 30 beats per minute after more than 3 minutes of standing upright.
Source: Current Rheumatology Reports, Dec 2008;10(6):463-466. PMID: 19007537, by Staud R. Department of Medicine, University of Florida College of Medicine, Gainesville, Florida, USA. [E-mail: email@example.com]
Monday, November 17, 2008
So I've been struggling.
I had NO idea how bad allergies could be!
With all the advertisements for anti-histamines on TV, it would seem like all you have to do is pop one, and voila! All better!
Not the case.
Also, I was under the misconception that allergies were like a mild cold. Not that having a cold non-stop would be fun, but...
Now, granted, I did have the sneezing, watery-itchy eyes, stuffy nose thing. That, the anti-histamines seem to have helped. (Along with eyedrop anti-histamines, and washing my hands immediately after touching kitty.)
But I still get EXCRUCIATING sinus congestion, which makes my brain fog sooo much worse, makes me so tired (plus the existing fatigue of course, which I've learned to live with, and was manageable until this point in time) I have to lie down and if I'm really unlucky, really bad painful sinus headaches.
In the past, whenever I had sinus issues, I could take a pseudoephedrine or two, and it was GONE, all better within 20-60 minutes. Now, I'm lucky if they work at all.
There there's the asthma attacks. Those, thankfully, seem to respond well to the anti-histamines, and having an air purifier.
So the big thing is the sinus congestion & subsequent headache, increased fogginess, and fatigue. Not only was the Pseudoephedrine not working, but it was making me jittery, moody, and possibly aggravating my heart & BP issues.
So I did some research and came up with the most unexpected thing: Digestive Enzymes!
Apparently alternative allergy practitioners use them to treat allergies.
Bromelain seemed to be a big one.
The next important supplement was Quercetin. Basically it sounds like a natural anti-histamine. Vitamin C is good as well, as it's good for the immune system.
I'd also been wanting to try Turmeric and Ginger supplements for inflammation (asthma and bodywise) and pain. (Turmeric, along with being an amazing anti-oxidant, clearing plaque from the blood vessels and the brain, also seems to work on the nociceptors, something about preventing or controlling central oversensitization, which causes FM pain and is why nerve pain/epileptic drugs are working for FM.)
I was lucky to accidentally come across a supplement that had all of those, plus Papain, another enzyme. It's definitely helped. Not cured, but helped.
Also, another big help is Neilmed Sinus Rinse. You have to do it for awhile, and keep it up to keep results.
I've read about a technique called BioSet, too, which totally makes sense to me, as it employs muscle testing, of which I am a believer, but of course, no $$ for that yet...The doctor I spoke with sounded confident she could if not cure, get the allergies very under control. Add another thing to my wishlist ;)
A bit worn out now, so more later.
Sunday, November 16, 2008
I seem to be having a lot of trouble with my legs lately. First pain around my knee. It kept spreading one night, and I was afraid I might have let inactivity flare up my tendonitis, a problem I've had before. It's one of my scariest problems, because when I get it, my knees get so bad...when I walk they scrape and pop and get weak. I ended up using a cane once, it was so bad. And then the pain...it hurts to even sit (the bending) and walking is awful, so I'm stuck lying down. The only cure is to strengthen the muscles around them. And keep them that way. So I guess I'd better make getting back to the gym a priority.
Not a small task though. I feel so overwhelmed lately, and I'm trying to get my life under control, but it's been a battle. The CFS seems to have calmed down a bit, but the FM is getting worse. My back is killing me, it flares up over nothing, even if I just get too worn out, and I end up tired, exhausted, and out of breath. I've been wondering if anyone else gets that? It's almost like I forget to breathe. It doesn't feel like asthma. It's almost like I'm too tired and my body forgets or something.
I have a weird new thing in the lower part, too, I've been having this odd pulling sensation near my right hip, like some really thin tissue is being pulled & stretched. It's been there for months, if I move just so, Ow. I guess I should get it checked out, but I'm not looking forward to dishing out more copays. And I know I need physical therapy, too, for this all to keep from getting worse. I'm so exhausted with being broke. But still too sick to do much about it.
Sometimes I'm tempted to take up a collection, lol. I mean, there was some girl who did that a few years back, solely to pay off her credit cards because she bought too mahy shoes and purses, and then lost her job and ended up $20,000 in debt. And I guess she was cute or something, because people did it!
Medical bills seem like a much more worthy cause.
Which reminds me...I need to go call in some refills!
Ta for now!
Monday, November 10, 2008
I've noticed I usually feel so much better at night...It's like it takes my body the entire day to warm up, lose the stiffness, and get going. I feel more productive, more flexible. So I got to wondering if there were any logical reasons for this. Did it just take me all day to warm up? Was it the muscle relaxer I take at night?
Well, I hate that I've even been taking that muscle relaxer every night (though that's how it's prescribed, I just would rather not) and I'm so groggy in the mornings, that doesn't seem to make taking it in the morning a good idea.
So I got to thinking about the idea of getting my body going faster. A good friend of mine goes for a morning walk. While "real" exercise like that, for me, in the morning is out of the question, I do remember when I was in a lot of pain this past summer, and having really tough mornings, even though just the light movement and breathing exercises at the beginning of the video made me want to crumple into a heap on the floor, once I got going it felt great, and I was feeling a lot better, getting through the day much more easily, in a better mood, and more motivated.
So if I can get back in that routine...
Then, I was also reading another blogger who mentioned she stretches at night, and I got to thinking, that that although I feel better in a sense, and more productive at night, it's when I have the most pain. Lately it's been driving me crazy. Tension, cramps, spasms, you name it. Lots of time on the massage chair. And the Thermophore. (Which incidentally, just pooped out on me!)Maybe stretching or Yoga is just what I need to help me relax...The big goal being, to get back on a more normal schedule. Lately, I'm lucky if I'm asleep by 3am, and frankly, I'm sick of it. Especially with the days getting shorter, I want to be up and at 'em, as early as possible. And that's still usually later than most people, even at my best, so...
Wish me luck on my new routine additions. Hell, on the idea of a routine, period!
Sunday, November 9, 2008
So I remembered the Doctor who was going to do the Neuropsych testing asking me if I was sure it was FM, if MS had been ruled out, and recalled that it was mentioned in one of the articles I posted, and decided to Google it. Interestingly enough, they did an amazing job of describing the Cognitive Dysfunction in MS, AND it sounds a LOT like what I deal with, so I decided to post it. Would love input on whether or not other people have similar problems to what is described in this article:
Cognitive Dysfunction as a Symptom of Multiple Sclerosis
Anyhow, I got there late, thankfully that wasn't a big issue. But I only managed to stay for two hours, an hour and a half in I was completely exhausted, having trouble breathing (something that seems to happen when I get tired, along with my back hurting up where my lungs are, don't know why that is) then I said my goodbyes (fog, pain, & fatigue ensuring that I left out a couple, I hate that!) and went to lie down in the car for a bit before heading home. Let me tell you, I was SO grateful for my car's cruise control! (And the great traffic! Or rather, lack thereof!)
On the way home, I felt happy and nostalgic at seeing my friends.
But by today though, I just felt sad, and lonely.
Sometimes, I can't feel that life is passing me by, watching my friends and family go on with theirs. I feel a little bit stranded out here, and lost.
Things have been tougher than I thought since I moved. At the time, my main concern was having a roof over my head, and a place to live in peace.
But there are still so many things to worry about.
I feel like I've tried so hard to find a new balance, a new path in my life, but nothing ever seems to work, at least not yet; I find nothing but brick walls. I'm afraid I've become incredibly disorganized, and despite my best efforts, I can't seem to get it together, or find the path to regain financial security and control of my life again.
I'm no longer have the cloud over my head about how I'll come up with the rent, but by the time I'd found the solution to that, I'd already just about driven myself into the ground yet again. After the move, I started having big setbacks. Foot sensitivity causing pain so bad I couldn't be on my feet more than 10 minutes without provoking it. Everything just seemed to unravel from there. Apart from not being to do much of anything, I started having the weird autonomic nervous system symptoms again, heart palpitations & weirdness, orthostatic hypotension, and then my allergies worsened, days on end with sinus pain, worsening my fog, and then when I'd just about got that under control, asthma attacks that left me trying not to panic and struggling to breathe for days at a time. Kind of put a kink in my plans to make a new life in my new city. Increasing doses of Neurontin and new shoes got the footpain under control, but I have new pains sprouting left and right...Some new stuff too, that I think might be nerve pain, a weird tingly tightness in my muscles, my chest, my arms, shoulders. It's not quite pain, but it's maddening nonetheless. And my stamina...It's been a tough pill to swallow, how easily I tire these days.
I've found myself struggling for acceptance AGAIN. I seem to go through the steps of grieving over and over again, and never quite finish them. I've found myself wondering if it's because before, I was struggling so hard to act as normal and make people believe I was as normal as possible, live up to their expectations of an attractive, smart, 20something. But the fact is, my life is anything but normal, and I keep finding myself trying to accept this. That's a huge struggle: letting go of wondering what other people must think of me, and accepting that I am doing the best I can, and that those "other" people have no idea what I struggle against each day from the second I get out of bed, and that that's not my problem. My job is making ME happy. So here's to that!
Friday, November 7, 2008
Neuropsychological Performance in Persons with Chronic Fatigue - Source: Psychosomatic Medicine, Jul 7, 2008
Speed of Mental Operations in Fibromyalgia: A Selective Naming Speed Deficit - Source: Journal of Clinical Rheumatology, Jul 17, 2008
Fibromyalgia and Cognition – Source: Journal of Clinical Psychiatry, May 2008 (online)
Following is a summary of the article by Jennifer Glass, to give you an idea:
"Patients with fibromyalgia frequently complain of cognitive problems or "fibrofog." The existence of these symptoms has been confirmed by studies of the incidence of cognitive problems in fibromyalgia patients and by the results of objective tests of metamemory, working memory, semantic memory, everyday attention, task switching, and selective attention. The results of these tests show that fibromyalgia patients have impairments in working, episodic, and semantic memory that mimic about 20 years of aging. These patients have particular difficulty with memory when tasks are complex and their attention is divided. Cognitive symptoms in these patients may be exacerbated by the presence of depression, anxiety, sleep problems, endocrine disturbances, and pain, but the relationship of these factors to cognitive problems in fibromyalgia patients is unclear. Standardized tests and treatment have not yet been established for cognitive problems in fibromyalgia patients."
Another great article, based on another study that came out this past year can be found in the April-July 2008 issue of Fibromyalgia Aware Magazine, entitles What Do You Mean, My Brain is Shrinking?! pg 54 by Patrick B. Wood, M.D.
Tuesday, November 4, 2008
Sunday, November 2, 2008
I just added a poll for the month of November.
I'm curious to know how many people with FMS/CFS are able to work full-time, part-time, or at all. It seems most people with FM/CFS I have come across, online at least, can't really hold a regular, full-time job, so I want to see how accurate that perception is.
It will be up until November 30th.
Thanks for your input.
I'm going to try something and make this a series of posts, so if you find you like them, you can read, otherwise skip to the others.
A Day in the Life...Will a glimpse into a day in the life of and FM/CFS patient which illustrates unique challenges faced by people like us every day. Some of us are healthier, and some of us less so. Personally, my abilities fluctuate, from day to day, or week to week, which is another reason I think this might be beneficial, for illustrating that.
I worry that all these details will be tiresome for some people. But then I remember that it is my aim to help people out there going through what I am, and I think that just maybe, if they see their own lives in my words, they will know that they are not alone in dealing with the hassles of life with chronic illnesses such as FM/CFS. I know it lifted my spirits the other day, when reading someone else's blog, I came across a story that sounded like something right out of my life, but that I'd never shared with anyone, because I felt like it was something I alone was dealing with. It was really good to know I wasn't, and next time I find myself in that situation, I will remember that, and I think it will lighten the load a bit.
As for any non-patients reading this blog, my hope is that I will help you to better understand your loved one and what they deal with from day to day, and raise awareness of how these diseases interfere with everyday life, and better understand why we need to raise awareness, and continue to encourage research.
So here goes...
Today started out well. Lazy Sunday. Slept in as late as I wanted.
Got up. Didn't feel tooo stiff, or sore. Place all to myself.
Took my allergy medicine, to stave off the more and more frequent asthma
Ate, watched a little TV, and felt like CLEANING.
This was a big deal. It made me HAPPY! (I grew up with a clean-freak Mom
and I've been known to practically have a meltdown when I have to let someone see my apartment a mess, which I can assure you NEVER happened pre-Fibro). Lately, I've been having a hard time feeling up to anything that practical though, guilt or no. For some reason, my stamina has PLUNGED, meaning I get worn out FAST.
But today, I felt about as normal as it gets, and decided to put it to good use!
So I tidied up the living room. Tidied up and organized the kitchen.
Same for the bathroom. I was hoping to get to the real cleaning, sweeping, mopping, dishes, that stuff, but I was already worn out, feet aching threateningly, and legs tired, and I'd promised myself I'd do some Yoga, too. (Lately I've been trying to put into practice the idea that even if I start out feeling great, and feel really motivated, that's no reason to drive myself into the ground. Simple logic, right? Unfortunately, once I get started, I want to do it ALL. Just call me the Queen of Excess!)I hoped maybe the Yoga would stretch me out, relax my muscles out of
their complaints against the tidying up, and I'd manage just a little more, but I reminded myself not to push it. Still, I got part of dinner cooking on the stove before I got started. I tried to be extra careful not to stretch too hard, as good as it felt, because I've gotten totally out practice the last weeks, and last time, even chair yoga strained some muscles. (That's really a new low, I don't know what's up with that! The great thing about this Yoga program, which I reviewed below, is that even on bad days, it made me feel better, and there was never any real fall but...before. But last time, I could barely walk for a couple of days.)
The Yoga felt really good. I felt things releasing, muscles finding more normal resting positions. A little more relaxed and centered. But, my body felt even more shaky after, mainly from the lower back down, and my shoulders down to my hands. Weak, and shaky. I figured maybe I just needed to lie down, rest, and it would pass. So I did, but it didn't. And the rest of dinner was still waiting to be cooked, so I did it. But I was hungry, and thinking maybe my blood sugar was low. So I drank some milk w/protein mix.
By the time dinner was done, my hands felt so weak, I was afraid they might give out unexpectedly while I was serving (my fingers have been known to do that) so I figured I'd better ask for help.
My Dad, had just gotten here, so...he got to do the honors, and I went and
got my trusty Thermaphore pad to see if it couldn't coax my muscles into relaxing while I ate dinner. Unfortunately, I was too tired to hold much of a conversation, the effort just seemed like too much, so I don't think I was much fun at dinner, maybe, just maybe even a little cranky...
Funny, I'd been sooo happy to have gotten some cleaning done earlier! But
in reality, I realized all I'd really done was give it a lick and a promise. I tried
to tell myself that at least the illusion of cleanliness was something. The place definitely looked a lot better, at first glance, anyhow.
It's just crazy how fast I've gone downhill lately. I'm actually HAPPY to stay home Friday nights and weekends lately, especially after that concert I forced myself to go to. I'm actually kind of relieved that I don't know anyone out here, because if people were calling me to go out, then I'd have to deal with the feelings about a.)Having people think I'm no fun (the horror!) or b.) Wanting to go, and knowing I shouldn't.I find myself having to lie down so much more during the course of the day,
and my blood pressure hasn't even been feeling low lately. Even sitting at the PC is a lot harder on me than it used to be. Usually when I get up, I'm stiff at the waist, takes a second for me to straighten up. Lately the top of my back hurts and is so stiff and bent, I feel like I'm going to become a hunchback! Kinda funny, I guess! Unless I do!I think I'm just wayyyy overdue for a chiropractor visit. Unfortunately, I don't see the finances granting me such a luxury any time soon. No matter how
hard I try, I can't seem to find the energy to get a steady income going.
(I'm waiting on the infamously screwed up Social Security Disability Process. This is Appeal #2, Year 2. Next decision: Approximately 16-22 months.)
So odd, you'd think after hanging in there through the last couple of years,where I didn't even know if I'd have a place to live from month to month,continuously, for TWO YEARS, now that that problem is taken care of, that I'd be doing so much better. But maybe I was on the verge of collapse for a long time, and my body was just gracious enough to wait until the right time.
Maybe it's not such a maybe. Because I felt like it so many times, like I just couldn't possibly go on, keep jumping through all the hoops, keep being disillusioned at things not working out. Being so tired, feeling so sick. I FELT myself pushing myself beyond capacity, and then some more. But it didn't kill me, so I can't on pushing. (Like Missy said in her comment to my last post, bad idea. But I really had no choice.)
It's hard to know what to think. Part of me says, okay, the basics are taken care of, so relax for a bit.
But part of me fears everything is still on the edge of spinning out of control,
and if I don't take steps and take some action, things will go to hell. Part of me says, hey, it should be easier now...take advantage of that and maybe life could be normal again. And part of me also wonders, what if I'm deteriorating from not trying enough? Maybe it was the trying that was keeping me functioning.
These are the types of dillemas a driven, productiveness-obsessed person with a chronic, fluctating illness faces. Especially one who abhored financial instability, and now finds herself stuck in a neverending spiral of it.
So much guilt and confusion.
Oh, and just to top things off, my beloved heavy-duty heating pad blew it's fuse a little while ago. That's where that whole relaxing for now plan blows up. I can't afford to relax. Yoga may be a temporary substitute for the Chiro, but I'm afraid if I put it off too long, I will join my many fellow FM friends who are in constant, excruciating pain, and knowing I might have prevented that...it's just too high a cost. Relaxing is just not an option. You can never truly relax when you're broke, anyhow. I have to find a way to make a living, sick or not. There has to be something I can handle. I can't believe there's not a way...
Well, I have stuff in the works. But sometimes it's just hard to imagine if the pain and stiffness get so bad from the extra time I've spent on this blog in the last week, and if I get so wiped out just tidying up around the apartment, how I can manage more?
No choice but to try though. The good ol' U.S.of A., land that I love, is just not the best place on Earth to be when a chronically ill person.
In England, or France, if my doctors were telling the government I couldn't work, that would be the end of it, I wouldn't be living in the lap of luxury by any means, but at least I could quit worrying, see the doctors and get the treatments I need, be sure to get all my medications, have some peace, and have a better chance at getting better. But here, the government would rather believe some doctors who talked to me for 5-10 minutes than years of medical evidence from my own doctors, and would sooner see me on the streets than help me. It makes me ask, how many people aren't as lucky as I am, and do end up on the streets? I swear, one day I will found an organization to help those people.
For now, I will remember them as I vote on Election Day. Five thousand dollars a year for health insurance just isn't gonna cut it for people with real medical problems, if even for the average Jane. We need universal healthcare, and there are already good examples to follow. We just need someone who isn't afraid to do it.