I am doing remarkably well considering I've been pretty active over the past two weeks. I'm holding off pain- but taking alot of medication. I've never really been comfortable with the whole medication thing. When I first got Fibro I swore I would never take pain meds, then I swore I would take pain meds only once a month. Now I'm taking up to eight a day, plus muscle relaxers, and this new drug. Sometimes it makes me wonder if there is anything left of me inside this body.
-Fiona
Thursday, March 29, 2007
Tuesday, March 27, 2007
The Results
I'm sitting at work listening to Nina Simone on my lunch break and it dawned on me that I've been to busy to blog the ever fascinating aspects of my condition.
Things have gotten better but only because my bosses hadn't researched the change in my position before proposing it. Now it turns out that they can't make me a 30 hour a week position without alot of extra cost. This would seem like a good thing, but they made it clear that they were unhappy that I was working from home- something they had never expressed before now. They've been kind of awful about this whole thing given the fact that they never told me they had a problem with these things. So frustrating.
On the upside my Litican is working this time, and I was placed on a new med called Mexiletine, which appears to be working rather well at extending my Litican treatment. I can walk around and don't need my walking aids, and my flare ups are responding to my pain pills for once. I feel fantastic, which is great, but it also makes me very angry at my bosses for no giving me a chance to prove myself on these new meds.
I've decided to start over and look for a new job. It seems to be going really well, despite the fact that I got a Masters in 18th Century Poetry. It seems there is hope for me after all. I'm also making it a point to follow the rules to the letter at my current job until I can up and quit. Felicity, my sister also works with me as a student, and she was going to start working here full time when she graduates this June, but she has also decided to look for alternatives to this place because of what they did to me.
I know it sounds like I'm a poor loser, but really I can understand how they feel and their need to make these rules. Its just giving me no warning and no ability to change without punishment is not an appropriate way of handling the situation. If they didn't want me to work from home they should have said it the first time they felt uncomfortable. I'm a manager I know how this stuff works.
Alright, time to write one more cover letter before I have to clock back in.
Things have gotten better but only because my bosses hadn't researched the change in my position before proposing it. Now it turns out that they can't make me a 30 hour a week position without alot of extra cost. This would seem like a good thing, but they made it clear that they were unhappy that I was working from home- something they had never expressed before now. They've been kind of awful about this whole thing given the fact that they never told me they had a problem with these things. So frustrating.
On the upside my Litican is working this time, and I was placed on a new med called Mexiletine, which appears to be working rather well at extending my Litican treatment. I can walk around and don't need my walking aids, and my flare ups are responding to my pain pills for once. I feel fantastic, which is great, but it also makes me very angry at my bosses for no giving me a chance to prove myself on these new meds.
I've decided to start over and look for a new job. It seems to be going really well, despite the fact that I got a Masters in 18th Century Poetry. It seems there is hope for me after all. I'm also making it a point to follow the rules to the letter at my current job until I can up and quit. Felicity, my sister also works with me as a student, and she was going to start working here full time when she graduates this June, but she has also decided to look for alternatives to this place because of what they did to me.
I know it sounds like I'm a poor loser, but really I can understand how they feel and their need to make these rules. Its just giving me no warning and no ability to change without punishment is not an appropriate way of handling the situation. If they didn't want me to work from home they should have said it the first time they felt uncomfortable. I'm a manager I know how this stuff works.
Alright, time to write one more cover letter before I have to clock back in.
Tuesday, March 20, 2007
A Day of Dread
Yesterday will live in infamy, at least for me. I had high hopes when it started out, but in the end it sucked beyond all reason. As Rory Gilmore would say, "I have used the word sucked so much it has lost all meaning." Let me explain.
My IV Litican treatment went fine, better than the last treatment and I expect it to work longer. I'm not free from pain, but I'm moving which is nice. My doctor was, as usual, perfect. She listened and prescribed all sorts of fun stuff that she thinks will help. Great.
When I arrive back at work I find my bosses wanting to speak with me. Yikes. They want me to go down to a 30 hour work week. This would be fine if my sister was working full time and could support us, but she's in school right now and only has a part time job. They feel I can't put in 40 hours and that I'm making myself sick. They are right, but I have no choice. At least they are letting me keep my benefits.
The major problem here is that this is just another example of how my life has been put on hold for Fibro. I gave up the thought of getting a PhD, of having a job I love, of living the life I've always wanted. Now I'm failing at holding down a mediocre job that I hate. Great.
What makes the whole thing worse is that most Fibros would kill for a 30 hour a week job with benefits and bosses who believe that Fibro exists. I would be really happy except I just bought a house, and I need to be able to afford it. Why didn't they tell me earlier. Why didn't they warn me this was coming. Now I have no choices.
Last but no least my childhood dog died yesterday. I haven't seen her since summer and now she's gone. She was old, and in pain, so in a way I'm happy for her, but it still sucks to lose someone no matter why.
Well hopefully today will be better.
Salvate!
-Fiona
My IV Litican treatment went fine, better than the last treatment and I expect it to work longer. I'm not free from pain, but I'm moving which is nice. My doctor was, as usual, perfect. She listened and prescribed all sorts of fun stuff that she thinks will help. Great.
When I arrive back at work I find my bosses wanting to speak with me. Yikes. They want me to go down to a 30 hour work week. This would be fine if my sister was working full time and could support us, but she's in school right now and only has a part time job. They feel I can't put in 40 hours and that I'm making myself sick. They are right, but I have no choice. At least they are letting me keep my benefits.
The major problem here is that this is just another example of how my life has been put on hold for Fibro. I gave up the thought of getting a PhD, of having a job I love, of living the life I've always wanted. Now I'm failing at holding down a mediocre job that I hate. Great.
What makes the whole thing worse is that most Fibros would kill for a 30 hour a week job with benefits and bosses who believe that Fibro exists. I would be really happy except I just bought a house, and I need to be able to afford it. Why didn't they tell me earlier. Why didn't they warn me this was coming. Now I have no choices.
Last but no least my childhood dog died yesterday. I haven't seen her since summer and now she's gone. She was old, and in pain, so in a way I'm happy for her, but it still sucks to lose someone no matter why.
Well hopefully today will be better.
Salvate!
-Fiona
Saturday, March 17, 2007
The Great Fall and What Drugs Are What
Yesterday, my first day back in the real world ended with sort of a bang. The walker I got for myself is one of the really cool roller ones with breaks, a seat and a basket to hold all of my stuff. The major problem with it is that its intended to be a walker only, so only two of the wheels, the "front" wheels have independent motion. Well, yesterday I was too tired to make it all the way to the bathroom at my work. Its really far down the hall from my office and I was too tired to make it all the way, so I sat on my walker and rolled myself backward down the hallway. I was going slow, holding the wall and trying to be careful, but I hit a bump and oops! over the back of the walker I go my back slamming into the bar on the way down.
So I'm bruised and humiliated and laying on the floor with a walker on top of me. Whats a girl to do? The basket feature saved me, because I had my cell phone on hand and was able to crawl to it and get help.
Back to bed with me now, only I have a twisted and bruised back on top of the Fibro-Fun. I really don't mean to complain, but it seems I can't catch a break. Every time I get out of bed something happens to send me right back.
Fortunately my doctor got in touch with me this weekend and upped my pain medication doses, and my muscle relaxants.
Since I'm talking about it, I should probably go into the different kinds of drugs given to Fibros.
1. Pain Medications- There are several kinds starting with the most familiar like Vicodin, or Darvocet. Those two are narcotic based meds and can be addictive and have some major side effects. These are used for short term only, or for really extreme cases where nothing else can be done. Since I'm only 25 I won't use these drugs for anything more than a day at a time once every three months. The pain medications that are more useful for Fibros are non-narcotics like Tramadol also known as Ultram. Ultram is found to be more effective when taken with 2 500mgs of Tylenol for some reason. This is a safe drug that can be taken in 50mg tablets up to eight times a day- but only if a doctor recommends this dosage!
2. anti-inflammatories- Since swelling is not a symptom that all Fibros get, not everyone is on an anti-inflammatory, but many of us are. Fibro usually involves only low grade swelling all over the body, and often these drugs do little good without horrible side effects. The side effects of high doses of Anti-inflammatories is GI problems which is already a side effect of Fibro anyway. Its almost better to put up with the swelling. These drugs also have long term effects that make them slightly dangerous for young Fibros to use for life-time treatment. There are many different kinds of these drugs, but usually Mobic and Voltarin are the strongest and the only effective on Fibros. They really do a number on your stomach lining, and for me taking them is like being kicked in the gut. I can't really do it for more than a week.
3. antidepressants- Since Fibro is a nerve disorder/sleeping disorder/brain chemical thing doctors often prescribe antidepressants. This includes Zoloft, and Prozac and other familiar names. These drugs are usually given in very small doses, much smaller than usual. In the same sort of category is Endep/Elaval- a drug that has been used for Fibros since the beginning. Endep works to block the re-uptake of serotonin after your body releases it. This treatment comes from the theory that Fibros have less serotonin available in our bodies and thus need it to stay in the system longer. This category of drug is often used at bed time to help achieve restorative sleep.
4. muscle relaxants- These drugs do exactly what they sound like they do. They relax muscles, and often have the side effect of making it really hard to concentrate. If you've seen Sixteen Candles you know what I mean. Cycloflex, Flexeril are the most commonly prescribed These drugs went into use for Fibro because at one time it was seen as a muscle disorder. They aid with the muscle aches that really do come with Fibro, but just as with the narcotic pain pills they shouldn't be used on a regular basis.
5. dopamine agonists- like "Mirapex stimulate(s) nerves in the brain which are normally stimulated by dopamine, a brain chemical that helps control motor functions and movement." I'd like to know more about this before I go into it too much, but it appears drugs like Mirapex are starting to be used for Fibro do to new research connecting Fibro to low levels of dopamine. I'm currently on it, and haven't experienced much benefit-wise yet, but they've recently upped my dose as I was on the lowest possible.
6. IV Litican treatments- This really seems to be a new thing as I haven't seen much buzz about it, but from my experience its well worth looking into. I've had two treatments so far, and the first one worked really well, and the second was botched slightly and didn't work at all. It used to be used in end of life pain especially for terminal cancer cases, but has moved on to chronic pain. Basically its a monthly treatment with Litican, an anesthetic, sent directly into the central nervous system through and IV over the course of an hour. Since Litican only has a half life of half and hour it appears that its not that the drug numbs the central nervous system, but rather it restarts it. Since the pain Fibros feel isn't coming from outside stimulus the restart stops- for a short period of time- the false signals of pain. Fibros have reported up to three weeks of relief, and frankly I would give anything to feel the way I did the three weeks after my first treatment. It sometimes doesn't work as well the second time, but I have hopes that when I get my next treatment it will work.
Several things need to be considered with Fibro drugs. First should seem obvious but I'm going to put it here anyway. NEVER TAKE ANY MEDICATION WITHOUT CONSULTING YOUR DOCTOR. No medicine is 100% safe, and I'm not a doctor so what I say here is merely collected information not a recommendation. Also it takes weeks to see the results of medication on your body, especially the dopamine/anti-inflammatory/serotonin drugs. Always take them as your doctor recommends and wait for results. Sometimes it is dangerous to take yourself off of these medications without a doctors help. When messing with brain chemicals you can't just stop and start at will. Be safe, and always ask a doctor.
Well this has been a really long post so I'm going to sign off.
Salvate!
-Fiona
So I'm bruised and humiliated and laying on the floor with a walker on top of me. Whats a girl to do? The basket feature saved me, because I had my cell phone on hand and was able to crawl to it and get help.
Back to bed with me now, only I have a twisted and bruised back on top of the Fibro-Fun. I really don't mean to complain, but it seems I can't catch a break. Every time I get out of bed something happens to send me right back.
Fortunately my doctor got in touch with me this weekend and upped my pain medication doses, and my muscle relaxants.
Since I'm talking about it, I should probably go into the different kinds of drugs given to Fibros.
1. Pain Medications- There are several kinds starting with the most familiar like Vicodin, or Darvocet. Those two are narcotic based meds and can be addictive and have some major side effects. These are used for short term only, or for really extreme cases where nothing else can be done. Since I'm only 25 I won't use these drugs for anything more than a day at a time once every three months. The pain medications that are more useful for Fibros are non-narcotics like Tramadol also known as Ultram. Ultram is found to be more effective when taken with 2 500mgs of Tylenol for some reason. This is a safe drug that can be taken in 50mg tablets up to eight times a day- but only if a doctor recommends this dosage!
2. anti-inflammatories- Since swelling is not a symptom that all Fibros get, not everyone is on an anti-inflammatory, but many of us are. Fibro usually involves only low grade swelling all over the body, and often these drugs do little good without horrible side effects. The side effects of high doses of Anti-inflammatories is GI problems which is already a side effect of Fibro anyway. Its almost better to put up with the swelling. These drugs also have long term effects that make them slightly dangerous for young Fibros to use for life-time treatment. There are many different kinds of these drugs, but usually Mobic and Voltarin are the strongest and the only effective on Fibros. They really do a number on your stomach lining, and for me taking them is like being kicked in the gut. I can't really do it for more than a week.
3. antidepressants- Since Fibro is a nerve disorder/sleeping disorder/brain chemical thing doctors often prescribe antidepressants. This includes Zoloft, and Prozac and other familiar names. These drugs are usually given in very small doses, much smaller than usual. In the same sort of category is Endep/Elaval- a drug that has been used for Fibros since the beginning. Endep works to block the re-uptake of serotonin after your body releases it. This treatment comes from the theory that Fibros have less serotonin available in our bodies and thus need it to stay in the system longer. This category of drug is often used at bed time to help achieve restorative sleep.
4. muscle relaxants- These drugs do exactly what they sound like they do. They relax muscles, and often have the side effect of making it really hard to concentrate. If you've seen Sixteen Candles you know what I mean. Cycloflex, Flexeril are the most commonly prescribed These drugs went into use for Fibro because at one time it was seen as a muscle disorder. They aid with the muscle aches that really do come with Fibro, but just as with the narcotic pain pills they shouldn't be used on a regular basis.
5. dopamine agonists- like "Mirapex stimulate(s) nerves in the brain which are normally stimulated by dopamine, a brain chemical that helps control motor functions and movement." I'd like to know more about this before I go into it too much, but it appears drugs like Mirapex are starting to be used for Fibro do to new research connecting Fibro to low levels of dopamine. I'm currently on it, and haven't experienced much benefit-wise yet, but they've recently upped my dose as I was on the lowest possible.
6. IV Litican treatments- This really seems to be a new thing as I haven't seen much buzz about it, but from my experience its well worth looking into. I've had two treatments so far, and the first one worked really well, and the second was botched slightly and didn't work at all. It used to be used in end of life pain especially for terminal cancer cases, but has moved on to chronic pain. Basically its a monthly treatment with Litican, an anesthetic, sent directly into the central nervous system through and IV over the course of an hour. Since Litican only has a half life of half and hour it appears that its not that the drug numbs the central nervous system, but rather it restarts it. Since the pain Fibros feel isn't coming from outside stimulus the restart stops- for a short period of time- the false signals of pain. Fibros have reported up to three weeks of relief, and frankly I would give anything to feel the way I did the three weeks after my first treatment. It sometimes doesn't work as well the second time, but I have hopes that when I get my next treatment it will work.
Several things need to be considered with Fibro drugs. First should seem obvious but I'm going to put it here anyway. NEVER TAKE ANY MEDICATION WITHOUT CONSULTING YOUR DOCTOR. No medicine is 100% safe, and I'm not a doctor so what I say here is merely collected information not a recommendation. Also it takes weeks to see the results of medication on your body, especially the dopamine/anti-inflammatory/serotonin drugs. Always take them as your doctor recommends and wait for results. Sometimes it is dangerous to take yourself off of these medications without a doctors help. When messing with brain chemicals you can't just stop and start at will. Be safe, and always ask a doctor.
Well this has been a really long post so I'm going to sign off.
Salvate!
-Fiona
Friday, March 16, 2007
Patience is a virtue
Well, I'm at work and its going better than I thought it would. I'm having trouble sitting, but I'm managing ok. It seems like the work is enough distraction and I'm just glad to be out of bed.
I've noticed something though, and I have a feeling it happens to other Fibros. When I'm in alot of pain, my usual patience wears thin. My sister can't do anything right in my eyes. No matter how hard she tried I treat her like an incompetent. When talking to her about this, and begging her forgiveness for being a brat she alerted me to the fact that I'm only like this when I have to be somewhere. She claims that when I spend the day in bed, though I'm usually in more pain, I have the patience of a saint, but when I have to face the big bad world I'm a brat. This makes me ponder whether this is coming from a psychological fear or just the result of pain. Perhaps its because I have to move more and do more when I'm out of bed, and not being able to do for myself is annoying in the extreme.
I'm a very independent person and always have been. I lived alone until I could no longer take care of myself, and my "little accidents" became rather life threatening. I'm glad I had a sister to come help me, but it still angers me that I can't take care of myself. Felicity, my sister, is the most patient person there is, and she genuinely tries to let me do as much for myself as possible, but to no avail. I still get angry.
I'm sure this is how other disabled people feel. Especially if you can remember a time when you could do anything you wanted. Licity, and I used to be runners when we were in high school. We were on the track and cross country team together. She still runs in the mornings, but she says its not the same without me. God, how we took that for granted. I never pictured my future being like this.
There is no cure. There are no effective treatments. There is only pain. I'm usually cheery about this whole thing, but today, after a week in bed, and knowing that this is only one week among a million others I can look forward to, its hard to have hope.
Salvate.
-Fiona
I've noticed something though, and I have a feeling it happens to other Fibros. When I'm in alot of pain, my usual patience wears thin. My sister can't do anything right in my eyes. No matter how hard she tried I treat her like an incompetent. When talking to her about this, and begging her forgiveness for being a brat she alerted me to the fact that I'm only like this when I have to be somewhere. She claims that when I spend the day in bed, though I'm usually in more pain, I have the patience of a saint, but when I have to face the big bad world I'm a brat. This makes me ponder whether this is coming from a psychological fear or just the result of pain. Perhaps its because I have to move more and do more when I'm out of bed, and not being able to do for myself is annoying in the extreme.
I'm a very independent person and always have been. I lived alone until I could no longer take care of myself, and my "little accidents" became rather life threatening. I'm glad I had a sister to come help me, but it still angers me that I can't take care of myself. Felicity, my sister, is the most patient person there is, and she genuinely tries to let me do as much for myself as possible, but to no avail. I still get angry.
I'm sure this is how other disabled people feel. Especially if you can remember a time when you could do anything you wanted. Licity, and I used to be runners when we were in high school. We were on the track and cross country team together. She still runs in the mornings, but she says its not the same without me. God, how we took that for granted. I never pictured my future being like this.
There is no cure. There are no effective treatments. There is only pain. I'm usually cheery about this whole thing, but today, after a week in bed, and knowing that this is only one week among a million others I can look forward to, its hard to have hope.
Salvate.
-Fiona
Thursday, March 15, 2007
Feeling Better?
I find it hard to tell if I feeling better after several days in bed. My muscles ache from lack of movement, and all I really want to do is get up and move around. The last time I had it this bad I would force myself out of bed whenever I felt even the slightest bit of better. The result was that I spent the next three days in bed. Since I'm doing so poorly, I've decided to take at least today to really get better. It doesn't seem to be working as I'm still in lots of pain, but at least its an effort.
I'm sure my bosses are thrilled by this. They seem sympathetic on the phone, but I worry about my job. My sister and I just bought a house, and I need this job to afford to live in it. I also need this job for the health insurance. The problem is that my bosses never fire anyone, which seems like it would be a good thing for me, but instead they make things miserable until people quit. Not my idea of good business. I'm just worried that all my hard work will be destroyed by something I can't control.
The problem with Fibro is it sometimes seems to other people like we can control it. If I get stressed at work, I'll probably get a flair up. To others it may seem like I'm pouting after a stressful meeting when in reality I just worked too hard and hurt myself.
Excuse me, I have to go lay down now.
Salvate
-Fiona
I'm sure my bosses are thrilled by this. They seem sympathetic on the phone, but I worry about my job. My sister and I just bought a house, and I need this job to afford to live in it. I also need this job for the health insurance. The problem is that my bosses never fire anyone, which seems like it would be a good thing for me, but instead they make things miserable until people quit. Not my idea of good business. I'm just worried that all my hard work will be destroyed by something I can't control.
The problem with Fibro is it sometimes seems to other people like we can control it. If I get stressed at work, I'll probably get a flair up. To others it may seem like I'm pouting after a stressful meeting when in reality I just worked too hard and hurt myself.
Excuse me, I have to go lay down now.
Salvate
-Fiona
Wednesday, March 14, 2007
40 Ways to Name Your Pain
Having a body like mine is an interesting experience. It is never predictable, and always full of surprises. Five minutes from now I could jump up from the bed and do a lap about the room, and our latter I might not be able to sit up. There's no pattern, and no reason, though sometimes there are hints. If I over exert myself, from carrying my own groceries or parking to far from the story, I can expect to be leveled my a flair up an hour or a day later. Sometimes my joints crack, sometimes my muscles ache, but their is always something, and it's never boring.
They say Inuit cultures have 40 words for snow. Fibros have 40 ways to describe pain. Its searing, is sharp, a dull ache, a slow burn, a cramped muscle or a deep prod. We all learn the different ways our body lets us know that it thinks something is wrong.
At one time I tried to start a joint journal, which sounds better than a pain diary, but less accurate. I recorded the places I hurt and what medicines I took, and what walking aids I used for each day. The problem was it changed every minute. I would start with a compelling throb in my spin and end up with a tender jaw line. I found myself with pencil in hand every moment of the day trying to capture what I was feeling. Needless to say it wasn't a rousing success.
Often Fibro resources tell you to keep such a journal. It helps your doctors and gives you some idea about what your main symptoms are. I can't help but feel these suggestions are given by someone who has never experienced Fibro. There's too much to write, and we are already trying to live our lives among the fun our bodies have come up with.
What we could really use is a Fibro sufferer to become an MD and do research on our condition. Problem there of course is the fact the Fibros would die in med school. I nearly keeled over doing my masters and there was not residence work to make me crazy.
I guess what I'm saying is that Fibros have to take their doctors in hand, and let them know what is possible and what is not. Most docs I go to have little time to see me, being at big University Hospitals and working with many patients in severe pain. Insist that they take the time with you. Your insights into what is happening to you might help them with someone else. Also it will let them know that you are committed to your treatment, and they can't just pawn you off with platitudes.
Salvate!
-Fiona
They say Inuit cultures have 40 words for snow. Fibros have 40 ways to describe pain. Its searing, is sharp, a dull ache, a slow burn, a cramped muscle or a deep prod. We all learn the different ways our body lets us know that it thinks something is wrong.
At one time I tried to start a joint journal, which sounds better than a pain diary, but less accurate. I recorded the places I hurt and what medicines I took, and what walking aids I used for each day. The problem was it changed every minute. I would start with a compelling throb in my spin and end up with a tender jaw line. I found myself with pencil in hand every moment of the day trying to capture what I was feeling. Needless to say it wasn't a rousing success.
Often Fibro resources tell you to keep such a journal. It helps your doctors and gives you some idea about what your main symptoms are. I can't help but feel these suggestions are given by someone who has never experienced Fibro. There's too much to write, and we are already trying to live our lives among the fun our bodies have come up with.
What we could really use is a Fibro sufferer to become an MD and do research on our condition. Problem there of course is the fact the Fibros would die in med school. I nearly keeled over doing my masters and there was not residence work to make me crazy.
I guess what I'm saying is that Fibros have to take their doctors in hand, and let them know what is possible and what is not. Most docs I go to have little time to see me, being at big University Hospitals and working with many patients in severe pain. Insist that they take the time with you. Your insights into what is happening to you might help them with someone else. Also it will let them know that you are committed to your treatment, and they can't just pawn you off with platitudes.
Salvate!
-Fiona
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