Yep, struggling with insomnia again. The medication I take for profound depression is called Seroquel. It is indicated for those with bi-polar and schizophrenia, but is also used for people who resist treatment with the usual depression meds (that'd be me).
Seroquel is great as an anti-depressant and is also a fantastic sleep aid. Some people take a very low dose of it for sleep in lieu of the usual sleep medications because it's non addictive and it actually allows you to go into normal, deep sleep.
Seroquel is rotten for weight gain. They warn you 25 pounds and I got all 25 in 1 month. Seroquel also makes you feel so hungry I can't explain it. After I have taken my dose before bed, if I wake up, I will eat an entire box of granola, a box of donuts, once I even baked a cake at 2 AM on my Seroquel buzz and ate almost the entire thing.
I have never been an eater before. I could take or leave food so this is really hard for me. I have finally had J. put locks on the 2 pantries that I get into at night and even with that I still find things to eat (corn meal mush? I was desperate).
So this explains my whale-appearance right now. I hate it so much that I am now down to my lowest dose of Seroquel for sleep purposes and my metabolism should speed up again. I also hope the cravings cease although they haven't tonight. I ate junk, junk, and more junk and probably went 4 times over my 1000 calorie limit.
When I wake up in the AM, I am so ashamed of myself for not having the will power. Of course at this point the Seroquel buzz has burned off and I'm not that crazed hungry person.
But here is my dilemma: I don't want to take the Seroquel at high doses anymore so I can lose my weight and get back to my normal size 4. But at the low dose of 50, I don't sleep. If I go back up to 75, the weight gain will be back in full force. . the mid-point where it won't make you crave food/gain weight and still help you sleep is between 25 to 50 mgs. 50 is clearly not working so my choices are: 1/deal with the insomnia; 2/go up on Seroquel to 75 and keep trying to get the weight off by extreme means of discipline; 3/stay on 50 and go back to using sleep aids such as Ambien.
Note, I used Ambien as a sleep med for 0ver 10 years and my tolerance level was so high I could take 30 mgs and still be awake. I have not touched Ambien for well over a year+ until this past week when I've finally given up on trying to go back to sleep on my own.
"They" say that FM causes you weight gain and insomnia, so I hope that within a month or two the insomnia will be gone and my weight will have started to decrease.
As for tonight, I am feeling sickly full (ate 2 pieces of pie + 2 PB&Js) and am kicking myself for eating them. . and I am on the way to the kitchen to take an Ambien.
Is all of this stuff related to FM? Could I really be rid of insomnia in a month from now after I've had it severely for over 15 years?? Will the Seroquel drop kick start my metabolism and will I be able to exercise enough to get back to my normal size?
If I could have a yes to all of those answers, I'd be so happy I can't even express to you how much that'd help my life and my happiness. . . but I'm a skeptic. I know that a positive attitude can change everything but I am not an optimistic person. I'm a true fatalist. . .
Pain today was about 6/10 due to it being so warm. . but still having a CFS cycle. . very tired and my lack of activity makes it even harder to lose weight.
I can only hope that this place does turn out to be a miracle for me. . I'm secretly hopeful so keep those positive vibes coming, ok?
l_l
Thursday, May 22, 2008
Monday, May 19, 2008
Blog #2--The Calm Before The Storm
Ok. . . did my first post explain my situation well? Are you in? If so, read on. . and remember, I'm wordy but I'll try and make it worth your while. .
It's about 18 days out before I leave and I'm scared to death. I have all these thoughts swirling through my head 'what if it doesn't work?', 'what if my dad & I kill each other due to fighting?', 'how will my marriage survive 2.5 months of not being together when it's already so fragile?', 'will j like being alone and not want me to come back?', 'what if this is a scam?' and on. . and on. . and on.
I have been in a fatigue cycle now for about a week. I've gained back the 3 pounds I lost in Omaha and that makes me more upset. . but I still cheat and eat when I'm not supposed to. I'm fairly ashamed of myself for not having more will power. I mean, I look like shit and I usually know that means I need to do something about it but when your life has very little joy, food does become a factor of debate even though I should be extremely strict in my 1000 calorie diet.
There isn't much argument against why I should go. . although I have a lot of skepticism. The treatment course seems way too easy as opposed to what I've been through. Then again, what does Occams Razor say?
Yes, I'm skeptical. . I am not a believer in only Western medicine but I feel that I'm doomed to be a sick/frail person. . because since the age of 12 it's been that way. So how could this place possibly change me.
Still, I have to look at the facts:
-my parents are paying for it (I'm ashamed to say I cannot afford to do so)
-my parents are paying for my rent and my dad is taking 2-3 months off of his life to be with me.
-i'm allowed to take 2 of my cats
-no one is going to put me on weird meds that make me sick or anxious (note--I don't do well with amphetamines, I'm much better on downers).
-no one is going to hurt me and the treatments cannot possibly hurt more than I do right now
-what do I have to lose?
I guess the only thing I have to lose is the fact that if it doesn't work there will be 4 people in this world, including myself, that will be devastated. Sure, I ask the other 3 *all the time* what will happen if I don't respond to treatment and they say "we'll keep looking for something new". . but you and I know that:
1/money doesn't grow on trees & we only have a limited amount (I hate to even think about where the $$ is coming from now)
2/my parents aren't getting any younger (i.e.-they clean my house daily, which I am ashamed to admit and I simply cannot help much because I'm hurting too much or am too tired)
3/j. didn't apply for this job when we got together. sure 'for sickness and in health' but he probably is really tired of 'in sickness' and virtually has no wife. i'm pretty much a fixture of the couch or bed. i do make him coffee each day but c'mon. . .
Pain level today is about an 8/10 (w/ medication). As usual, am in shorts and have an ice pack. Opiates cause you to sweat and have hot flashes and since I don't respond to *any* of the other meds that are for FM, I'm stuck with Lortab, Percoset, Oxycontin. . . and all the fun side effects that go along with them. I've built up such a tolerance that I could drive 100 miles taking a Percoset and a Flexeril. What scares me more is that the medications are already losing their power as my body adjusts to them. . what's next when I've used all of these up?
18 days. . I've never been as scared in my life as I am now.
l_l
It's about 18 days out before I leave and I'm scared to death. I have all these thoughts swirling through my head 'what if it doesn't work?', 'what if my dad & I kill each other due to fighting?', 'how will my marriage survive 2.5 months of not being together when it's already so fragile?', 'will j like being alone and not want me to come back?', 'what if this is a scam?' and on. . and on. . and on.
I have been in a fatigue cycle now for about a week. I've gained back the 3 pounds I lost in Omaha and that makes me more upset. . but I still cheat and eat when I'm not supposed to. I'm fairly ashamed of myself for not having more will power. I mean, I look like shit and I usually know that means I need to do something about it but when your life has very little joy, food does become a factor of debate even though I should be extremely strict in my 1000 calorie diet.
There isn't much argument against why I should go. . although I have a lot of skepticism. The treatment course seems way too easy as opposed to what I've been through. Then again, what does Occams Razor say?
Yes, I'm skeptical. . I am not a believer in only Western medicine but I feel that I'm doomed to be a sick/frail person. . because since the age of 12 it's been that way. So how could this place possibly change me.
Still, I have to look at the facts:
-my parents are paying for it (I'm ashamed to say I cannot afford to do so)
-my parents are paying for my rent and my dad is taking 2-3 months off of his life to be with me.
-i'm allowed to take 2 of my cats
-no one is going to put me on weird meds that make me sick or anxious (note--I don't do well with amphetamines, I'm much better on downers).
-no one is going to hurt me and the treatments cannot possibly hurt more than I do right now
-what do I have to lose?
I guess the only thing I have to lose is the fact that if it doesn't work there will be 4 people in this world, including myself, that will be devastated. Sure, I ask the other 3 *all the time* what will happen if I don't respond to treatment and they say "we'll keep looking for something new". . but you and I know that:
1/money doesn't grow on trees & we only have a limited amount (I hate to even think about where the $$ is coming from now)
2/my parents aren't getting any younger (i.e.-they clean my house daily, which I am ashamed to admit and I simply cannot help much because I'm hurting too much or am too tired)
3/j. didn't apply for this job when we got together. sure 'for sickness and in health' but he probably is really tired of 'in sickness' and virtually has no wife. i'm pretty much a fixture of the couch or bed. i do make him coffee each day but c'mon. . .
Pain level today is about an 8/10 (w/ medication). As usual, am in shorts and have an ice pack. Opiates cause you to sweat and have hot flashes and since I don't respond to *any* of the other meds that are for FM, I'm stuck with Lortab, Percoset, Oxycontin. . . and all the fun side effects that go along with them. I've built up such a tolerance that I could drive 100 miles taking a Percoset and a Flexeril. What scares me more is that the medications are already losing their power as my body adjusts to them. . what's next when I've used all of these up?
18 days. . I've never been as scared in my life as I am now.
l_l
Blog #1--To Get To The End, You Must Go Back To The Beginning
Being the first post on this blog, I want to say welcome to all. If you came here via an email I sent you or if you landed here by chance, either way I appreciate your time and energy.
Before I can begin this blog, I need to go back to where it all started. For most of you this may be old news but if I can help even one person in this world by sharing my experience, then it is worth the effort of my hands and fingers.
I also should say that I am not posting these blogs to my myspace site. The blogs on that site cover a range of ideas, feelings, thoughts and this one is only going to be about my journey and where it takes me. If you decide you want to read the stuff on myspace (be prepared, I don't hold back)--feel free, they are at www.myspace.com/lunabast
So, the beginning. . . in late 2003 I began to suffer from mild depression. Not a big deal after several major losses of mine -- 4 to be exact. However, I did not recover from them in a normal amount of time. By the summer of 2005 I was so worn out, depressed, and sick that I took a 2 month hiatus from work. However, that stint was only a preview of what was to come.
Upon my return to work in Oct. of 2005, I never fully recovered. All routine activities were a million times harder to do, I felt physically drained constantly, I hurt all over constantly, and had horrid insomnia. Getting to work began to be so hard and I had no time left to take off. My parents and my husband, J., were the only 3 who kept me going and after several months I could see the strain it was having on them just to get me to work.
In late October of 2006, I decided to quit my job and work on getting better. My last day--after 14.5 years of service--was November 27th. We'd all naively thought that once the stress of work was behind me that I'd bounce back, but the opposite occurred and I fell into the worst depression of my life. I'm actually surprised I am still alive since I was so suicidal from October until early February of 2007. My doctor finally found a protocol of medications that lifted me from the gloom. Again, we all naively thought I would be up and around within a few weeks. Nope, not again. I didn't feel depressed but I had no energy to do anything and I had horrible pains, particularly in my lower back and hips and what I believed to be migraines. I also had what I termed "neck headaches" which left me severely sick in bed with no light and no real relief other than sleep.
By March of 2007 my doctor diagnosed me with Fibromyalgia (FM) and Chronic Fatigue Syndrome. I also had hypothyroid disease, anemia, and insomnia. For ease of writing, I am going to classify all of these items into FM. Many actually believe FM causes all of the other items I listed.
I asked what to do about it and was given pain medications and told to take PT for "pain management". The PT place had never heard such a thing and that was the beginning of this bizarre world of medicine. . where you find that doctors sometimes are the last to know the real fixes and often let you linger because their egos won't admit that they are not able to solve your solution. To be fair to my doctor, this wasn't the case--at least that's what I hope--but the general message was 'grin and bear it'.
Life became stagnant. I'd sleep until past noon, try to get out of bed but it hurt too much to stand on my feet and move my legs that it'd take a long time to get up. I walk stiffly like an old woman and my depression, although in control, was now partially explainable. I spent hours in front of the TV or sleeping. . for reading (which I love) was too much effort. I got very sick several times that spring so much that I had to cancel a month-long trip to France. I think about it now and wonder how I ever thought I could go on a trip like that. What a joke.
In May, I heard of a clinic in Denver that treated FM. I had a friend who went there and was doing better, although not normal by any means, but I was desperate. So, every month we drove up there and I got pills and supplements piled onto my list of meds to take, received shots and IVs for pain, and generally spent a lot of $$. By August, I was on a yeast-free diet and taking 86 supplements/pills a day. . but I wasn't feeling any better so I ceased treatment and went back to my doctor here w/ my tail between my legs.
During the duration of the diagnosis and my first treatment center, I gained 25 pounds due to medications and inactivity. To me, this is a very big deal. I only weigh 120 normally and now weigh about 150. I do work out probably up to 4 times a week and I diet but when medications slow your metabolism down, there isn't much beyond exercise and diet that you can do. . If your an FM patient you probably say 'how sick can she be if she works out that much'? Let me tell you, it literally takes an act of the Divine to do it. . I take a Percocet before and after and it is an hour of hell. I think the only reason I am able to do this is because I am pretty used to being physically sick due to an illness I had when I was a teen that mimics Lupus. So, working out is not easy and I go for a week where I'm good and then land up in bed for 2 weeks so it's 2 steps forward and 3 steps back.
The main medication that made me gain weight was for my depression. By the summer of 2007, I felt good enough to be taken off it and I started to lose weight. However, by mid-October, that gloom returned in full force and I had to go back on this medication. It's the only one that works for me. However, during the past few weeks I have slowly started to go off this medication. I simply need some time to get my weight down and then when I need to get back on it, I can diet w/o having to lose weight. I hate to say this but I'm at the lowest dose now and I feel the gloom all over me, like a fog that wraps itself upon you. But I don't care. . I need to fix this problem no matter how depressed I get.
Since October, I have been trying to build my life around the time that I feel good but to be honest, it's not enough. I also see the burden I put on my family to simply keep my house clean and the fridge full and I know this can't go on.
So now you have the beginning and I hope you will follow me through--for this is not the end. I am moving to Lake Tahoe in early June of 2008 for a new treatment center for FM. It is based on the premise that the muscles & vertebrae around the menenges (membranes surrounding the brain) are out of alignment and are causing the menenges to be pinched. All nerves running up to and out of the brain have to go through the channel of the menenges and since it is pinched the nerves are mis-firing all the time.
To explain FM to you, it is a nerve disorder that sends incorrect nerve pulses around your entire body. For example, my left leg will be killing me with the typical FM pain of feeling like a nail is being driven into your leg and I'll shake my left leg and suddenly the pain is gone but now my hand is hurting. . that's why it's called the phantom pain. It also messes with the signals going to your brain and many who have FM (I have a severe case) have 'brain fog' which basically does not let you say the words you need to say. I can ask someone to get me the book from the table but I can't remember the word for table so I stutter there for several minutes until I remember it. Very frustrating and when I am nervous or around a lot of people it really starts to flair up and I end up sounding very stupid.
Anyway, this clinic requires 2.5+ months of treatment. Only chiropractic and massage techniques are used, no one there is messing with your medications. You have treatments 3 times a day, 6 days a week. You're also restricted from picking anything up off the floor, cannot carry anything like a backback or bag on your shoulders, and cannot life your hands over your head for 6 months. Most people I know who have went there, say they followed those rules for more like a year. It literally takes 6 some months for the alignment of the spine & vertebre to reset itself in their new positions.
I leave here on June 6th and will be back in late August or early September. The ironic thing is that last year I missed the summer (which I love dearly) because I was inside & sick all the time and this year I will miss it again. . but I hope for a good reason.
What's the reason for these set of blogs? For one, to hopefully update all of you who so kindly call, email, send letters and never get a response from me. I am grateful for all of you understanding that it's so hard for me to keep up and hope this will be a way to keep people informed over the next few months.
The last reason is what I said in my email--each of you have given my life a lot of positive energy (whether recent or long ago) and I'm here to ask for it again. . this time for the sake of my family and my health. You don't have to respond to any of these posts. . just say a prayer or send me a positive thought. I know all of you are busy with your own lives and I just ask for a few minutes of your time to read these entries and to say a small prayer or wish because this clinic is the last one I know of as of this time. . and if it doesn't work, I'm not sure what we'll do but it will be devastating, nonetheless.
I hope you'll be part of this journey. I need each of you, as you are that important to me.
l_l
if you've figured out my blog name then you know me far better than I thought. . and therefore grateful you are here with me in spirit.
Curious? If so, check out: www.myspace.com/lunabast
Before I can begin this blog, I need to go back to where it all started. For most of you this may be old news but if I can help even one person in this world by sharing my experience, then it is worth the effort of my hands and fingers.
I also should say that I am not posting these blogs to my myspace site. The blogs on that site cover a range of ideas, feelings, thoughts and this one is only going to be about my journey and where it takes me. If you decide you want to read the stuff on myspace (be prepared, I don't hold back)--feel free, they are at www.myspace.com/lunabast
So, the beginning. . . in late 2003 I began to suffer from mild depression. Not a big deal after several major losses of mine -- 4 to be exact. However, I did not recover from them in a normal amount of time. By the summer of 2005 I was so worn out, depressed, and sick that I took a 2 month hiatus from work. However, that stint was only a preview of what was to come.
Upon my return to work in Oct. of 2005, I never fully recovered. All routine activities were a million times harder to do, I felt physically drained constantly, I hurt all over constantly, and had horrid insomnia. Getting to work began to be so hard and I had no time left to take off. My parents and my husband, J., were the only 3 who kept me going and after several months I could see the strain it was having on them just to get me to work.
In late October of 2006, I decided to quit my job and work on getting better. My last day--after 14.5 years of service--was November 27th. We'd all naively thought that once the stress of work was behind me that I'd bounce back, but the opposite occurred and I fell into the worst depression of my life. I'm actually surprised I am still alive since I was so suicidal from October until early February of 2007. My doctor finally found a protocol of medications that lifted me from the gloom. Again, we all naively thought I would be up and around within a few weeks. Nope, not again. I didn't feel depressed but I had no energy to do anything and I had horrible pains, particularly in my lower back and hips and what I believed to be migraines. I also had what I termed "neck headaches" which left me severely sick in bed with no light and no real relief other than sleep.
By March of 2007 my doctor diagnosed me with Fibromyalgia (FM) and Chronic Fatigue Syndrome. I also had hypothyroid disease, anemia, and insomnia. For ease of writing, I am going to classify all of these items into FM. Many actually believe FM causes all of the other items I listed.
I asked what to do about it and was given pain medications and told to take PT for "pain management". The PT place had never heard such a thing and that was the beginning of this bizarre world of medicine. . where you find that doctors sometimes are the last to know the real fixes and often let you linger because their egos won't admit that they are not able to solve your solution. To be fair to my doctor, this wasn't the case--at least that's what I hope--but the general message was 'grin and bear it'.
Life became stagnant. I'd sleep until past noon, try to get out of bed but it hurt too much to stand on my feet and move my legs that it'd take a long time to get up. I walk stiffly like an old woman and my depression, although in control, was now partially explainable. I spent hours in front of the TV or sleeping. . for reading (which I love) was too much effort. I got very sick several times that spring so much that I had to cancel a month-long trip to France. I think about it now and wonder how I ever thought I could go on a trip like that. What a joke.
In May, I heard of a clinic in Denver that treated FM. I had a friend who went there and was doing better, although not normal by any means, but I was desperate. So, every month we drove up there and I got pills and supplements piled onto my list of meds to take, received shots and IVs for pain, and generally spent a lot of $$. By August, I was on a yeast-free diet and taking 86 supplements/pills a day. . but I wasn't feeling any better so I ceased treatment and went back to my doctor here w/ my tail between my legs.
During the duration of the diagnosis and my first treatment center, I gained 25 pounds due to medications and inactivity. To me, this is a very big deal. I only weigh 120 normally and now weigh about 150. I do work out probably up to 4 times a week and I diet but when medications slow your metabolism down, there isn't much beyond exercise and diet that you can do. . If your an FM patient you probably say 'how sick can she be if she works out that much'? Let me tell you, it literally takes an act of the Divine to do it. . I take a Percocet before and after and it is an hour of hell. I think the only reason I am able to do this is because I am pretty used to being physically sick due to an illness I had when I was a teen that mimics Lupus. So, working out is not easy and I go for a week where I'm good and then land up in bed for 2 weeks so it's 2 steps forward and 3 steps back.
The main medication that made me gain weight was for my depression. By the summer of 2007, I felt good enough to be taken off it and I started to lose weight. However, by mid-October, that gloom returned in full force and I had to go back on this medication. It's the only one that works for me. However, during the past few weeks I have slowly started to go off this medication. I simply need some time to get my weight down and then when I need to get back on it, I can diet w/o having to lose weight. I hate to say this but I'm at the lowest dose now and I feel the gloom all over me, like a fog that wraps itself upon you. But I don't care. . I need to fix this problem no matter how depressed I get.
Since October, I have been trying to build my life around the time that I feel good but to be honest, it's not enough. I also see the burden I put on my family to simply keep my house clean and the fridge full and I know this can't go on.
So now you have the beginning and I hope you will follow me through--for this is not the end. I am moving to Lake Tahoe in early June of 2008 for a new treatment center for FM. It is based on the premise that the muscles & vertebrae around the menenges (membranes surrounding the brain) are out of alignment and are causing the menenges to be pinched. All nerves running up to and out of the brain have to go through the channel of the menenges and since it is pinched the nerves are mis-firing all the time.
To explain FM to you, it is a nerve disorder that sends incorrect nerve pulses around your entire body. For example, my left leg will be killing me with the typical FM pain of feeling like a nail is being driven into your leg and I'll shake my left leg and suddenly the pain is gone but now my hand is hurting. . that's why it's called the phantom pain. It also messes with the signals going to your brain and many who have FM (I have a severe case) have 'brain fog' which basically does not let you say the words you need to say. I can ask someone to get me the book from the table but I can't remember the word for table so I stutter there for several minutes until I remember it. Very frustrating and when I am nervous or around a lot of people it really starts to flair up and I end up sounding very stupid.
Anyway, this clinic requires 2.5+ months of treatment. Only chiropractic and massage techniques are used, no one there is messing with your medications. You have treatments 3 times a day, 6 days a week. You're also restricted from picking anything up off the floor, cannot carry anything like a backback or bag on your shoulders, and cannot life your hands over your head for 6 months. Most people I know who have went there, say they followed those rules for more like a year. It literally takes 6 some months for the alignment of the spine & vertebre to reset itself in their new positions.
I leave here on June 6th and will be back in late August or early September. The ironic thing is that last year I missed the summer (which I love dearly) because I was inside & sick all the time and this year I will miss it again. . but I hope for a good reason.
What's the reason for these set of blogs? For one, to hopefully update all of you who so kindly call, email, send letters and never get a response from me. I am grateful for all of you understanding that it's so hard for me to keep up and hope this will be a way to keep people informed over the next few months.
The last reason is what I said in my email--each of you have given my life a lot of positive energy (whether recent or long ago) and I'm here to ask for it again. . this time for the sake of my family and my health. You don't have to respond to any of these posts. . just say a prayer or send me a positive thought. I know all of you are busy with your own lives and I just ask for a few minutes of your time to read these entries and to say a small prayer or wish because this clinic is the last one I know of as of this time. . and if it doesn't work, I'm not sure what we'll do but it will be devastating, nonetheless.
I hope you'll be part of this journey. I need each of you, as you are that important to me.
l_l
if you've figured out my blog name then you know me far better than I thought. . and therefore grateful you are here with me in spirit.
Curious? If so, check out: www.myspace.com/lunabast
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