As you know, a few months back I was getting a bit desperate. I was pretty much bed or couch-ridden for most of two months; I pretty much lost an entire summer. POTS was flaring up pretty bad, and Orthostatic Intolerance, all made worse by infection after infection, and I could tell my immune system was kaput. No sooner would I finish one round of antibiotics than I'd feel the infection returning, plus the Coxsackie B &/or Echovirus acted up too, so I couldn't even eat, was feverish, in pain, and weak as a kitten. I literally felt like I was dying at times, just wasting away...and it didn't help that apparently I'm sensitive to the antibiotic Bactrim, and didn't figure it out until I had an episode where my throat was closing up, the tachycardia flared up, and I couldn't breath and was having chest pain, not to mention feeling so weak and tired I couldn't re-arrange myself in bed w/o getting wiped out.
It was hell.
My doctor told me he wanted to try me on another anti-viral, after I stabilized a bit.
When I went back a few weeks later, he gave me an rx for Epivir, a drug used mainly to treat HIV, and also Hepatitis B. Yup, we're talking the big guns here.
(The doc chose it because it has been shown effective in treating a strain of Coxsackie B.)
Epivir, also known as Lamivudine, is a nucleoside analog reverse transcriptase inhibitor (also known as an nRTI). Basically, from what I can gather, it stops retro-viruses from duplicating in your cells. (If you watched Dr. Oz's explanation of what retroviruses do when he was explaining XMRV, that'll make sense...Basically he said they duplicate and copy themselves into the DNA of your own cells so the body can't fight them off...almost like a bad guy using a human shield...except I'm not even sure the immune system knows it's doing it because it's hiding so well, at least that's my interpretation...maybe it knows, but won't kill it's own cells?)
Anyways, that sounds good, right? Because the cells are still malfunctioning and sick, so the more the virus does this, the sicker you get. And if it can't do it anymore...I'm guessing the infected cells eventually die off and that gives the body a break and the immune system can respond to the damage the virus, and other infections, better. Again, total layperson's interpretation, so please cut me some slack if the science is a bit off.
Anyways. I got the original rx for it months ago, only it costs about $400, only available in brand name, and my old insurance had a $500 brand name deductible. I managed to find coupons and stuff and get it down to $200 or so, but I still couldn't afford that!
So, I ended up losing my insurance, and was able to sign up for assistance from the drug manufacturer and get it -- FREE! (They won't help you meet your deductible, but they will give it to you for free! Is that whacky or what?)
I was putting off taking it until the New Year, because I was afraid of side-effects, holidays are stressful and hard enough when you're chronically ill, and I wasn't sure how I'd respond.
Last night, I did some research, and found the side effects aren't too bad, not worse than anything I already take, except for something called IRS (lol!) or Immune Response Syndrome. Basically your immune system might suddenly go into gear in overdrive fighting all the infections it finds and cause an inflammatory/immune response which would result in feeling pretty rotten.
I was also debating, because I REALLY want to get back into an exercise regimen, and was planning on starting, like, now. I got nervous though, that taking the new med and starting to exercise again might be too much. And I REALLY need to start on it, even if it's super slow, not just because my genetically endowed gene for very generous hips is kicking in, but because it makes me feel better, not just physically, but mentally, too.
In the end, I said screw it, I took the little diamond shaped pill and I'm going to the gym on Monday, if only to do 5 minutes of cardio and the isometric exercises I started out with in Physical Therapy last year...
Today, I woke up, and I'll admit I did feel pretty groggy and yucky, like I was swollen all over, pretty miserable. I haven't felt QUITE that bad lately, but it happens occasionally, and it was a sunny day so my room got hotter than it's been in awhile, which always makes me wake up feeling like that, so...chances are it was just that.
The only thing I did notice, is it made me sleepy, and I think it is again now, so I'm off, at least to lie down...
Wish me luck, I hope to update regularly!
Showing posts with label coxsackie. Show all posts
Showing posts with label coxsackie. Show all posts
Saturday, January 2, 2010
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 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...
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...
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