I forget to write in here and my other blog. My brain isn't what it used to be. I forget lots of things. I make lists and lose them. Now that's scary.
Okay, update....forget weaning off the Methadone. The Nurse Practitioner says as long as I'm only taking 0.25 of the Xanax they can leave me on 40mg of Methadone. Hallelujah! Though lately it's certainly not pulling its weight like before, I'm still very thankful for the relief I do get. I fully realize that the docs don't have to give me such powerful drugs even though I am in life-altering pain. I'm grateful I found a pain doc who isn't opposed to the use of narcotics for pain management when it's necessary.
I've been feeling so icky lately I kinda slacked off on the exercise. Now I have this wonderful cold that's moving down into my chest and if I got on my bike I'd be hacking my lungs half out. I think I'll make myself get on there tomorrow though and do half an hour anyhow, even if I do it on the lowest setting and don't last the hour I usually do. Anything is better than nothing, eh?
I know this is discombobulated. I just don't have the ability to focus very much right now. My pain level is going up and I'm gonna have to go pop a Vicodin again before it gets out of control.
Thanks to everyone who reads and leaves supportive notes. I pray you have a nice holiday season.(did that sound PC enough?)
Merry Christmas and God bless you all. I appreciate you. You're in my prayers.
Saturday, December 11, 2010
Friday, August 27, 2010
Day 1791 - Oh, help.
When it rains, it pours.
So the pain doc wants me to wean off the Methadone eventually. I'm not sure what he wants me to take, since there isn't much else I can take in a realistic sense; anyhow, I've been half-heartedly looking for another pain management group in the hopes they will help me get control of the pain without insisting I increase my stress level, and thereby my pain level, by suggesting from the get-go that I consider how I want to wean off the drugs that enable me to function on a daily basis as at least a minimally contributing member of society.
Now, my mom has decided I am: 1) Addicted to my prescription meds. This is, in her eyes, happening in spite of the fact that I am monitored by my pain med doc, my psychiatrist, and a neurologist in addition to my primary doc. It's amazing that none of these physicians, who see me a heck of a lot more often than she does, haven't noticed this so-called addiction....2) Lazy and need to go back to work in addition to getting out and walking like she does to get some exercise. Never mind that I have a bad knee and have been told that walking or other weight-bearing exercises, for the time being, will only hasten the eventual necessity of a knee replacement. Add to this that there are very, very few people I know of who want a nurse on Methadone to control pain, one who nods off from the narcotic dose required to keep the pain manageable, to take care of themselves or their family members...3) Hubby and I are, in her words, perverted and sick. My sister, whose own life is a mess on good days, told mom hubby and I are into S&M which, though it would be none of their business if it were true, is a blatant lie. I don't have a masochistic bone in my body. I don't like pain. It hurts. However, she believed said sister, and proceeded to write me a letter telling me I'm fat, lazy, addicted, perverted and sick. Nice, loving mother, huh? Anybody want her?
About the knee...several weeks back I did something to it. I can't remember what, or when, but it probably had to do with chickens, since that is where I get most of my activity. Anyhow, I finally got off my butt and called the orthopedist last week. I saw him Tuesday. They did the perfunctory X-rays. He saw them, and then we all saw them. The left knee is on its way out. It's not going today, or tomorrow, but it's not going to last forever. Most of it is probably a combination of working on my feet for 15 years as a nurse and being obese. I will accept that. I'm not gonna hide it. Interestingly enough I had planned on starting Weight Watchers again with Abby this week; the orthopedist was happy to hear that. In addition, I had been considering a recumbent bike or one of those foot pedaling things, largely because between my environmental allergies and my pain, I don't do well with outside exercise. I either hurt, break out, or both. Indoor, non-weight-bearing exercise seems the best way to go.
He numbed my knee with the funny spray freezy stuff and an OUCH of Lidocaine and then drained about 50cc of fluid off said knee and injected some cortisone to help with the inflammation, all after managing to convince me that it wasn't going to hurt as much as cortisone injections into soft tissue do. I have a friend who has those kinds of injections and she locks up and is in horrid pain for a few days after her shots. I didn't want anything to do with that. Oh and by the way - he did a great job. He is a good shot and didn't lie to me, which I really appreciate. He says we can do those until they don't work, and then we can inject fluid of a lubricant style into the capsule to help movement after that, and then, in the future, we'll look at surgical management. This is my kind of doctor.
I talked it over with hubby and ordered a Schwinn recumbent bike this week. Once it's here, I'll be building a close relationship with it. It will help me lose weight, help my activity tolerance, and it will lengthen the amount of time I can wait before needing to undergo the knife again. I mean, it's only been 7 weeks since I had my right hand carpal tunnel surgery done; the left wrist and elbow (it was more involved than the right side) was done in November of last year. I'm starting to feel like a guinea pig. At least these scars aren't from self-mutilation, eh?
So, I have a sister or two that are upset that I hung up on them - my younger when she tried to tell me that I need to let my mom do what she wants to in my house, to which I said, "It's my house, and she plays by my rules or doesn't play. I'm not her patsy any more and she's not going to intimidate me or make me feel guilty any more." (Okay, so we're still working on that) My older sister - well, I hung up on her after she lied to me when I asked her if she knew what was up with Mom and then called me back several hours later to tell me she had told Mom hubby and I are supposedly into S&M. Now this sister has been married 3 times, she cheated on her first two husbands and then married someone who verbally abuses her and has cheated on her in addition to getting fired from a fantastic job at Disney because the person he was cheating with was his boss' wife...and she has a right to judge me?
NOT.
Okay. So there we are. Bum left knee, maybe bum right knee as well - we just haven't looked at that one yet. Pain doc I'm not thrilled with because he seems to be hell-bound to get me off my pain medication and onto, what, short acting narcotics? He wants me to wean off the Methadone and, according to the research, there is "a chance" once I go back on it I won't need as much, if I need any at all. Okay. So what do I take in the meantime....or do I just get nothing, and go back to being in so much pain it's almost not worth living? I get the feeling he thinks I don't need this medication or he's getting pressure from the DEA, which wouldn't be a surprise since they seem to delight in tormenting physicians who actually act in their patient's behalf and give them adequate medication for chronic pain...and there is a big part of the problem. Many people in the medical community pooh-pooh those with chronic pain, even claiming that we don't need the meds that keep us going day to day. Just because you can't see or put your finger on the cause of my pain doesn't mean it isn't there. It just means it's invisible. It's still pain. It still hurts. It still interferes with my life. I still get judged, even by my own family members. And, I deal daily with the knowledge that I cannot work outside the home, which means even those of us with degrees and training end up in pain. Even those who aren't addicts or uneducated or what have you end up in pain, the kind of pain that leaves you begging God to take you home. Yeah, it hurts like hell. And to have people negate or minimize that pain hurts like hell, too, because it invalidates what we feel and experience, and what many of us struggled to hide because we knew what we were going to face when we revealed that we were taking narcotics to control our pain. I'm not the only one whose family members have decided that there is an addiction problem when the meds are being taken for a chronic pain issue. People tend to disbelieve what they can't see. If I was missing a leg, or two, would it make my pain medication prescription more justified? Why? Is the pain my nerves shoot across my face and into my eye socket like an ice pick heading for my brain any less valid than pain from an amputation?
Sorry for the rambling. I'm a bit muddled these days.
So the pain doc wants me to wean off the Methadone eventually. I'm not sure what he wants me to take, since there isn't much else I can take in a realistic sense; anyhow, I've been half-heartedly looking for another pain management group in the hopes they will help me get control of the pain without insisting I increase my stress level, and thereby my pain level, by suggesting from the get-go that I consider how I want to wean off the drugs that enable me to function on a daily basis as at least a minimally contributing member of society.
Now, my mom has decided I am: 1) Addicted to my prescription meds. This is, in her eyes, happening in spite of the fact that I am monitored by my pain med doc, my psychiatrist, and a neurologist in addition to my primary doc. It's amazing that none of these physicians, who see me a heck of a lot more often than she does, haven't noticed this so-called addiction....2) Lazy and need to go back to work in addition to getting out and walking like she does to get some exercise. Never mind that I have a bad knee and have been told that walking or other weight-bearing exercises, for the time being, will only hasten the eventual necessity of a knee replacement. Add to this that there are very, very few people I know of who want a nurse on Methadone to control pain, one who nods off from the narcotic dose required to keep the pain manageable, to take care of themselves or their family members...3) Hubby and I are, in her words, perverted and sick. My sister, whose own life is a mess on good days, told mom hubby and I are into S&M which, though it would be none of their business if it were true, is a blatant lie. I don't have a masochistic bone in my body. I don't like pain. It hurts. However, she believed said sister, and proceeded to write me a letter telling me I'm fat, lazy, addicted, perverted and sick. Nice, loving mother, huh? Anybody want her?
About the knee...several weeks back I did something to it. I can't remember what, or when, but it probably had to do with chickens, since that is where I get most of my activity. Anyhow, I finally got off my butt and called the orthopedist last week. I saw him Tuesday. They did the perfunctory X-rays. He saw them, and then we all saw them. The left knee is on its way out. It's not going today, or tomorrow, but it's not going to last forever. Most of it is probably a combination of working on my feet for 15 years as a nurse and being obese. I will accept that. I'm not gonna hide it. Interestingly enough I had planned on starting Weight Watchers again with Abby this week; the orthopedist was happy to hear that. In addition, I had been considering a recumbent bike or one of those foot pedaling things, largely because between my environmental allergies and my pain, I don't do well with outside exercise. I either hurt, break out, or both. Indoor, non-weight-bearing exercise seems the best way to go.
He numbed my knee with the funny spray freezy stuff and an OUCH of Lidocaine and then drained about 50cc of fluid off said knee and injected some cortisone to help with the inflammation, all after managing to convince me that it wasn't going to hurt as much as cortisone injections into soft tissue do. I have a friend who has those kinds of injections and she locks up and is in horrid pain for a few days after her shots. I didn't want anything to do with that. Oh and by the way - he did a great job. He is a good shot and didn't lie to me, which I really appreciate. He says we can do those until they don't work, and then we can inject fluid of a lubricant style into the capsule to help movement after that, and then, in the future, we'll look at surgical management. This is my kind of doctor.
I talked it over with hubby and ordered a Schwinn recumbent bike this week. Once it's here, I'll be building a close relationship with it. It will help me lose weight, help my activity tolerance, and it will lengthen the amount of time I can wait before needing to undergo the knife again. I mean, it's only been 7 weeks since I had my right hand carpal tunnel surgery done; the left wrist and elbow (it was more involved than the right side) was done in November of last year. I'm starting to feel like a guinea pig. At least these scars aren't from self-mutilation, eh?
So, I have a sister or two that are upset that I hung up on them - my younger when she tried to tell me that I need to let my mom do what she wants to in my house, to which I said, "It's my house, and she plays by my rules or doesn't play. I'm not her patsy any more and she's not going to intimidate me or make me feel guilty any more." (Okay, so we're still working on that) My older sister - well, I hung up on her after she lied to me when I asked her if she knew what was up with Mom and then called me back several hours later to tell me she had told Mom hubby and I are supposedly into S&M. Now this sister has been married 3 times, she cheated on her first two husbands and then married someone who verbally abuses her and has cheated on her in addition to getting fired from a fantastic job at Disney because the person he was cheating with was his boss' wife...and she has a right to judge me?
NOT.
Okay. So there we are. Bum left knee, maybe bum right knee as well - we just haven't looked at that one yet. Pain doc I'm not thrilled with because he seems to be hell-bound to get me off my pain medication and onto, what, short acting narcotics? He wants me to wean off the Methadone and, according to the research, there is "a chance" once I go back on it I won't need as much, if I need any at all. Okay. So what do I take in the meantime....or do I just get nothing, and go back to being in so much pain it's almost not worth living? I get the feeling he thinks I don't need this medication or he's getting pressure from the DEA, which wouldn't be a surprise since they seem to delight in tormenting physicians who actually act in their patient's behalf and give them adequate medication for chronic pain...and there is a big part of the problem. Many people in the medical community pooh-pooh those with chronic pain, even claiming that we don't need the meds that keep us going day to day. Just because you can't see or put your finger on the cause of my pain doesn't mean it isn't there. It just means it's invisible. It's still pain. It still hurts. It still interferes with my life. I still get judged, even by my own family members. And, I deal daily with the knowledge that I cannot work outside the home, which means even those of us with degrees and training end up in pain. Even those who aren't addicts or uneducated or what have you end up in pain, the kind of pain that leaves you begging God to take you home. Yeah, it hurts like hell. And to have people negate or minimize that pain hurts like hell, too, because it invalidates what we feel and experience, and what many of us struggled to hide because we knew what we were going to face when we revealed that we were taking narcotics to control our pain. I'm not the only one whose family members have decided that there is an addiction problem when the meds are being taken for a chronic pain issue. People tend to disbelieve what they can't see. If I was missing a leg, or two, would it make my pain medication prescription more justified? Why? Is the pain my nerves shoot across my face and into my eye socket like an ice pick heading for my brain any less valid than pain from an amputation?
Sorry for the rambling. I'm a bit muddled these days.
Saturday, July 03, 2010
not so bad....
I get horribly introspective now and then, and my last post was reflective of that. It's rough, but I managed to pull myself up and remind myself how blessed I really am. Once in a while, though, it's good to be brutally honest even if it hurts. It's far better than hiding it way back inside somewhere and letting it fester. It is part of my mental health status that this happens, and I have learned that denying it doesn't change its existence. Many people are taken aback or shocked when they see that I can get that way. I live with it; it doesn't surprise me any more.
I was scheduled for a sleep study last night. Apparently they use some nasty scented dryer sheets on the bed linens and after about half an hour in the room, waiting on the nurse to come and hook me up to the plethora of wires that are required for such a techno-savvy test, I was about to wilt into a puddle of upchuck. I turned everything off and left the room. As I made my way down the hallway she came up and asked if I was okay. I explained what was going on and we agreed my only alternative was to leave. We had already been questioning the wisdom of sticking so many patches to someone allergic to adhesive and latex and everything else I don't tolerate. I guess it was decided for us, no?
I've managed to stay eating very well since I got sick last weekend. I believe I've lost an inch off my waist already. I feel looser in my clothes, if that makes sense. It's a nice feeling not to have the fabrics snug on your body, but instead to have to reach down and tug up a skirt or a pair of pettipants once in a while. I'm certainly not going to complain. I can always make more if I need to.
I'm sticking with several small meals, very little bread or other carbs from processed grain, and more protein and fresh stuff. I've had cantaloupe, strawberries, yogurt, mesquite turkey breast, cheese, some whole grain crackers, nuts (mostly raw ones, thank you Target), and jello. Last night we had some of the Breyer's low carb ice cream bars with almond pieces in the chocolate.....oh, they sure don't taste low carb, but they are pretty much the only chocolate I can eat without paying for it later. I have cut my diet soda intake in half by making sure that every other thing I drink is either sugar free koolaid, gatorade if I'm feeling like I need to replace electrolytes, or the like.
God is good. He is with me and He holds me up when I falter, patiently loving me back to sensibility. And because of that, I am blessed.
I was scheduled for a sleep study last night. Apparently they use some nasty scented dryer sheets on the bed linens and after about half an hour in the room, waiting on the nurse to come and hook me up to the plethora of wires that are required for such a techno-savvy test, I was about to wilt into a puddle of upchuck. I turned everything off and left the room. As I made my way down the hallway she came up and asked if I was okay. I explained what was going on and we agreed my only alternative was to leave. We had already been questioning the wisdom of sticking so many patches to someone allergic to adhesive and latex and everything else I don't tolerate. I guess it was decided for us, no?
I've managed to stay eating very well since I got sick last weekend. I believe I've lost an inch off my waist already. I feel looser in my clothes, if that makes sense. It's a nice feeling not to have the fabrics snug on your body, but instead to have to reach down and tug up a skirt or a pair of pettipants once in a while. I'm certainly not going to complain. I can always make more if I need to.
I'm sticking with several small meals, very little bread or other carbs from processed grain, and more protein and fresh stuff. I've had cantaloupe, strawberries, yogurt, mesquite turkey breast, cheese, some whole grain crackers, nuts (mostly raw ones, thank you Target), and jello. Last night we had some of the Breyer's low carb ice cream bars with almond pieces in the chocolate.....oh, they sure don't taste low carb, but they are pretty much the only chocolate I can eat without paying for it later. I have cut my diet soda intake in half by making sure that every other thing I drink is either sugar free koolaid, gatorade if I'm feeling like I need to replace electrolytes, or the like.
God is good. He is with me and He holds me up when I falter, patiently loving me back to sensibility. And because of that, I am blessed.
Sunday, June 27, 2010
Day 1729 - 3am and still awake
God, I need some peace. Please.
I'm stressing out here. The thought of losing my pain meds is making me hurt more. The necessity of decreasing the anxiety med certainly isn't helping. If I weren't so sensitive to medications, I could just jump into another category of meds or something and maybe that would help. However, I am severely limited, and therein lies the problem.
I need, for relief of my pain and anxiety, a combination of medications that has the potential of being a not-so-healthy combination. In fact, benzodiazepines and Methadone have the potential for making the partaker, well, dead. Never mind that I have been taking this particular set of meds for 4 years without obvious consequence. My pain doc will no longer allow me to combine them in the dosage that works for me when it comes to both pain relief and the ability to sleep, as you can tell by my still being awake at 3am.
Okay. For some reason the "enter" key no longer precipitates a line break. Hm. I wonder if this is a new tweak that Blogger has added to assist me in pulling my hair out.
Anyhow, so I stopped the nighttime dose of Xanax that was helping me enter dreamland without a long and arduous fight, and, as anticipated, sleep is now way overdue and longed for. It's not just the lack of sleep that the med affects...it's also the anxiety I've lived with since who knows when and no longer have the ability to hide at the level I could attain before.
I know in my heart that God is the Author of peace and that He is my sufficiency; my All in All; that He is my hiding place, my refuge in times of trouble. The struggle lies in the part of me that is still so very human - the part of my being that used to dread bedtime because of the monster that crept into my bedroom and put his hands where no male caretaker should ever touch a child...and yes, I've heard and been taught and read and had preached to me that God can take those memories away, but in His great wisdom He has chosen to allow me to retain them, partly in order to garner compassion and understanding and the ability to identify with the abused, the molested....and I struggle with this every day to one degree or another. The tweaking of the meds and the pain doc's desire to wean me off my pain meds triggers my abandonment issues. It also strikes at the fear of mismanaged power that I can hold at bay most of the time; it is not so easy when the issue is my well-being and ability to function as a rational member of the human race.
I am struggling, also, with a deep sense of melancholy and loss....the loss of opportunity that I perpetuated when I decided to marry an abusive man and create three lives that, along with my own, pay for that decision every day. I love my children deeply, yet it tears at my heart to watch them struggle, knowing that part of that struggle was my choice for their father. I realize that the concept of free choice is an integral part of becoming part of the family of God, yet, hindsight being 20/20, I also see from where I am seated that the result of my maternal grandparents' abuse of my mother led, consequentially, to their struggle as well.
What a conundrum. What a revelation. What a discovery of the absolute necessity of the saving grace of a loving and forgiving God, the Father that so many of us never had. Without Him I would have no hope, no reason to go on. I could so easily sink into the melancholy and let it swallow me alive, becoming lost in the hopelessness the evil one holds out temptingly if, for one moment, I turn my eyes away from my God, my Savior, my Hope and Salvation....I am achingly aware of the despair that drives some to suicide. I am, however, also acutely alert to the abhorrence that would be to the One Who, through His Son, closed the gap between a race of hopelessly lost mankind and His eternal rest.
Ah, my philosophizing brings out my vocabulary. There really isn't much need for it here with the cats and chickens, and my sweet hubby hasn't the education I have, so we speak much more simply with each other. Not that he isn't bright or gifted....it's just not in the same areas I am. Isn't it funny how God does that, pairing us with those who remind us that ours is not the only perspective of and on the planet? He is indeed a Great God, full of wisdom and patience, lovingly encouraging us to try again and again when we stumble and fall on our backsides, forgetting in our great rush to go somewhere, anywhere, that we must walk before we can run.......
In spite of the pain, the insomnia, the anxiety, the depression, the anger, the sadness, the hesitation....God is God and He will do what is best for me, in spite of my best efforts to mess it all up.
And for that, I am grateful. Without the pain, or the other associated issues, what, then, would be my need for a Great God? If I did have it all under control, why would I require the Master of All to intervene in my life? What would be the reason for His healing touch if none were ill, or feeble? Why would He demonstrate His redemptive powers if not for those wallowing in the filth of sin?
I will, therefore, trust Him. He knows what is best for me, and He will lead me through this just like He has led me through all the other trials in my life. It may not be easy, or fun, but I will not have to walk it alone, and I will reach the other side as long as I keep my eyes on Him and not the chaos around me...and here is my struggle....and my hope.
I'm stressing out here. The thought of losing my pain meds is making me hurt more. The necessity of decreasing the anxiety med certainly isn't helping. If I weren't so sensitive to medications, I could just jump into another category of meds or something and maybe that would help. However, I am severely limited, and therein lies the problem.
I need, for relief of my pain and anxiety, a combination of medications that has the potential of being a not-so-healthy combination. In fact, benzodiazepines and Methadone have the potential for making the partaker, well, dead. Never mind that I have been taking this particular set of meds for 4 years without obvious consequence. My pain doc will no longer allow me to combine them in the dosage that works for me when it comes to both pain relief and the ability to sleep, as you can tell by my still being awake at 3am.
Okay. For some reason the "enter" key no longer precipitates a line break. Hm. I wonder if this is a new tweak that Blogger has added to assist me in pulling my hair out.
Anyhow, so I stopped the nighttime dose of Xanax that was helping me enter dreamland without a long and arduous fight, and, as anticipated, sleep is now way overdue and longed for. It's not just the lack of sleep that the med affects...it's also the anxiety I've lived with since who knows when and no longer have the ability to hide at the level I could attain before.
I know in my heart that God is the Author of peace and that He is my sufficiency; my All in All; that He is my hiding place, my refuge in times of trouble. The struggle lies in the part of me that is still so very human - the part of my being that used to dread bedtime because of the monster that crept into my bedroom and put his hands where no male caretaker should ever touch a child...and yes, I've heard and been taught and read and had preached to me that God can take those memories away, but in His great wisdom He has chosen to allow me to retain them, partly in order to garner compassion and understanding and the ability to identify with the abused, the molested....and I struggle with this every day to one degree or another. The tweaking of the meds and the pain doc's desire to wean me off my pain meds triggers my abandonment issues. It also strikes at the fear of mismanaged power that I can hold at bay most of the time; it is not so easy when the issue is my well-being and ability to function as a rational member of the human race.
I am struggling, also, with a deep sense of melancholy and loss....the loss of opportunity that I perpetuated when I decided to marry an abusive man and create three lives that, along with my own, pay for that decision every day. I love my children deeply, yet it tears at my heart to watch them struggle, knowing that part of that struggle was my choice for their father. I realize that the concept of free choice is an integral part of becoming part of the family of God, yet, hindsight being 20/20, I also see from where I am seated that the result of my maternal grandparents' abuse of my mother led, consequentially, to their struggle as well.
What a conundrum. What a revelation. What a discovery of the absolute necessity of the saving grace of a loving and forgiving God, the Father that so many of us never had. Without Him I would have no hope, no reason to go on. I could so easily sink into the melancholy and let it swallow me alive, becoming lost in the hopelessness the evil one holds out temptingly if, for one moment, I turn my eyes away from my God, my Savior, my Hope and Salvation....I am achingly aware of the despair that drives some to suicide. I am, however, also acutely alert to the abhorrence that would be to the One Who, through His Son, closed the gap between a race of hopelessly lost mankind and His eternal rest.
Ah, my philosophizing brings out my vocabulary. There really isn't much need for it here with the cats and chickens, and my sweet hubby hasn't the education I have, so we speak much more simply with each other. Not that he isn't bright or gifted....it's just not in the same areas I am. Isn't it funny how God does that, pairing us with those who remind us that ours is not the only perspective of and on the planet? He is indeed a Great God, full of wisdom and patience, lovingly encouraging us to try again and again when we stumble and fall on our backsides, forgetting in our great rush to go somewhere, anywhere, that we must walk before we can run.......
In spite of the pain, the insomnia, the anxiety, the depression, the anger, the sadness, the hesitation....God is God and He will do what is best for me, in spite of my best efforts to mess it all up.
And for that, I am grateful. Without the pain, or the other associated issues, what, then, would be my need for a Great God? If I did have it all under control, why would I require the Master of All to intervene in my life? What would be the reason for His healing touch if none were ill, or feeble? Why would He demonstrate His redemptive powers if not for those wallowing in the filth of sin?
I will, therefore, trust Him. He knows what is best for me, and He will lead me through this just like He has led me through all the other trials in my life. It may not be easy, or fun, but I will not have to walk it alone, and I will reach the other side as long as I keep my eyes on Him and not the chaos around me...and here is my struggle....and my hope.
Monday, June 07, 2010
Med changes and side effects
On the 23rd of last month, the pain doc increased my pain meds from 30mg of Methadone a day to 40mg. He was concerned that my increased Vicodin intake might create a tolerance, thereby limiting its effectiveness for breakthrough pain.
I went up to 40mg a day for about a week, and noticed substantial swelling in my feet in addition to a lot of fatigue. I also couldn't drive or, on some days, even focus.
So, a few days ago, I decreased the dose to 35mg a day, divided over 3 doses. I take 10mg at midnight, 15 at 8am, and 10mg at 4pm. The pain has gone up some but the swelling hasn't done much at all. I'm going to give it a few days to see if the edema will lessen; if not, I suppose I'll have to go see my primary doc and maybe she'll give me a script for a diuretic to pull the extra fluid out of my tissues. Of course, I'm not sure if it will help or not...but it is definitely worthwhile thinking it might.
For a couple days there, I had pain at a 4 again. It was nice. I'm just not sure I'm prepared to deal with the swelling that goes with it, and it's not just in my feet. My hands are swollen. My body itself is edematous, in fact. Along with this there is the increasingly aggravated symptoms of carpal tunnel syndrome in my right hand. I do believe I'll be making an appointment with my hand surgeon post haste to have this tingling and general mess taken care of.
I recently had my disability review and they approved me for another 3 years. The first review was supposed to be after one year. My initial application was approved in 2007, so it was only 2 years late. For sure, getting reviewed and re-approved is easier than getting through the initial approval process. I thought that was never going to end. Fortunately, my tenacity comes in handy when needed.
I went up to 40mg a day for about a week, and noticed substantial swelling in my feet in addition to a lot of fatigue. I also couldn't drive or, on some days, even focus.
So, a few days ago, I decreased the dose to 35mg a day, divided over 3 doses. I take 10mg at midnight, 15 at 8am, and 10mg at 4pm. The pain has gone up some but the swelling hasn't done much at all. I'm going to give it a few days to see if the edema will lessen; if not, I suppose I'll have to go see my primary doc and maybe she'll give me a script for a diuretic to pull the extra fluid out of my tissues. Of course, I'm not sure if it will help or not...but it is definitely worthwhile thinking it might.
For a couple days there, I had pain at a 4 again. It was nice. I'm just not sure I'm prepared to deal with the swelling that goes with it, and it's not just in my feet. My hands are swollen. My body itself is edematous, in fact. Along with this there is the increasingly aggravated symptoms of carpal tunnel syndrome in my right hand. I do believe I'll be making an appointment with my hand surgeon post haste to have this tingling and general mess taken care of.
I recently had my disability review and they approved me for another 3 years. The first review was supposed to be after one year. My initial application was approved in 2007, so it was only 2 years late. For sure, getting reviewed and re-approved is easier than getting through the initial approval process. I thought that was never going to end. Fortunately, my tenacity comes in handy when needed.
Monday, May 31, 2010
Trying to lessen the pain
Well, when I went to see the pain doc last week he increased my Methadone to 40mg a day instead of 30mg. Now for me, this is a significant increase. I usually only increase by 5mg at a time. I asked him if I could do 35 instead but he really wanted me to do 40; I started the full 40mg dose on Thursday and have noticed a significant leveling off in the pain. It's not a lot less, but it's better than it was when I had to take the Vicodin almost every day. The pain doc was concerned, and rightfully so, about me building a tolerance to Vicodin since it's my primary breakthrough medication, so he wanted me to be taking enough Methadone that I wouldn't have to take breakthrough meds unless things get really bad.
I've been sleeping more, though still erratically. Oh well - I guess we can't have everything, can we? It's still frustrating as heck to be asleep off and on all the time instead of going to bed like normal people do and sleeping at night/being awake in the daytime. I doze off all the time, which is very frustrating. I should be used to it but I'm not. Maybe now that my pain is better controlled this will help.
I haven't driven since Tuesday. I don't drive for about 2 weeks after a med change. This helps me have time to adjust to the med increase and the accompanying brain fuzziness before I put myself behind the wheel of a car.
I see my psychiatrist and neurologist this coming week. I'm supposed to find out about the sleep study. I also want to talk to my shrink about my increased anxiety. I've been stress eating and I've gained more weight than I am even close to comfortable about. I've been picking more, bleeding more, and fretting more. I've rarely stopped humming for almost a month now. I can't figure that one out. I just hum and hum. Weird......
Hmmmmmmmmmmmmmmmm.....
I've been sleeping more, though still erratically. Oh well - I guess we can't have everything, can we? It's still frustrating as heck to be asleep off and on all the time instead of going to bed like normal people do and sleeping at night/being awake in the daytime. I doze off all the time, which is very frustrating. I should be used to it but I'm not. Maybe now that my pain is better controlled this will help.
I haven't driven since Tuesday. I don't drive for about 2 weeks after a med change. This helps me have time to adjust to the med increase and the accompanying brain fuzziness before I put myself behind the wheel of a car.
I see my psychiatrist and neurologist this coming week. I'm supposed to find out about the sleep study. I also want to talk to my shrink about my increased anxiety. I've been stress eating and I've gained more weight than I am even close to comfortable about. I've been picking more, bleeding more, and fretting more. I've rarely stopped humming for almost a month now. I can't figure that one out. I just hum and hum. Weird......
Hmmmmmmmmmmmmmmmm.....
Friday, May 14, 2010
Ouch.
For probably a week now I've been eating Vicodin/Lortab in addition to my Methadone. There is a nasty pressure behind my eyes and it will not go away. At least the Lortab helps the pain lessen enough to allow me to sleep for a couple hours.
They want to do a sleep study. I'm apprehensive. First off, I'm allergic to adhesive, so if they have to put patches on me, I'm gonna break out. Secondly, I'm a mouth breather. This means the nose things won't work. Next, I'm allergic to latex, so they will have to make provisions for a latex-free testing environment. Then, there's the claustrophobia condition to consider.
If you add this to the fact that I have a constant and unremitting pain to the right side of my face, and then a condition that causes chronic pain to the back area of my head called "occipital neuralgia," there is a pretty good indication that there is no way in Hades or anywhere else that they are going to be able to get one of those tight masks on my face and the back of my head.
Now, if I do end up with a diagnosis of sleep apnea, it will help with my disability continuation; be that as it may, I just don't know how it's going to work out.
Stress-wise, things have been incredible lately. Becky's in-laws moved back into the second trailer on the property across from us. This means more smell, more noise, & more aggravation. These people have poor personal hygiene, are lacking in manners, and have some of the most warped sense of their idea of Christianity I have ever experienced. When Becky ran away they let her stay there, in the same bedroom and bed as Matt, yet insisted to me over and over that there was no way those two were having sex in the bedroom. Mom was adamant that Matt knew the house rules and wouldn't break them. Man, either she was in serious denial or a liar, or both. They also told us that taking Becky into their house instead of telling her to come home and deal with her problems was, "The right thing to do." She lied and told them I was abusive and that I made her move all the furniture when she had to vacuum. At the time, after the tornado ripped the roof off over our heads, all we had in the living room was a rocking chair and a coffee table. They told her I was cruel for making her do chores - their kids didn't have chores, for making her go to school - their kids had been taken out of school for missing too much, and they were being haphazardly home schooled; and, after she asked to get her license so she could get a part time job (something I didn't do for her siblings because Tampa has public transportation and we were in walking distance of more than enough places for a teen to get jobs), I told her she had to get a job. She wanted to come home from school and go to Matt's. I made sure her chores and homework were done first. That's what my Mom did, and what I did for her siblings, and it's what I expected from her. Matt's mom didn't make the kids do anything, and that included getting out of bed to go to school. No chores. No responsibilities.
So Becky got mad because I was concerned about the grandkids living in a potentially dangerous environment and called DFS. This led to her telling me I would never see my grandchildren again. Ironically enough this happened only a year and a half after she finally started talking to us after a 4 1/2 year period of no communication once she left the house here.
This is harder on me than just about any of the other stressors in my life. Living so close, hearing the kids laugh and play, and even seeing them on occasion, yet not being allowed to talk to them or contact them, is about ripping my heart out. I just don't get it.
It's one of the reasons we're looking to move. One of the biggest reasons.
Before we can move, there are a few conditions that need to be met....
I don't know....the whole thing is just.....frustrating, painful, irritating....will it never end?
No wonder my head screams at me.
They want to do a sleep study. I'm apprehensive. First off, I'm allergic to adhesive, so if they have to put patches on me, I'm gonna break out. Secondly, I'm a mouth breather. This means the nose things won't work. Next, I'm allergic to latex, so they will have to make provisions for a latex-free testing environment. Then, there's the claustrophobia condition to consider.
If you add this to the fact that I have a constant and unremitting pain to the right side of my face, and then a condition that causes chronic pain to the back area of my head called "occipital neuralgia," there is a pretty good indication that there is no way in Hades or anywhere else that they are going to be able to get one of those tight masks on my face and the back of my head.
Now, if I do end up with a diagnosis of sleep apnea, it will help with my disability continuation; be that as it may, I just don't know how it's going to work out.
Stress-wise, things have been incredible lately. Becky's in-laws moved back into the second trailer on the property across from us. This means more smell, more noise, & more aggravation. These people have poor personal hygiene, are lacking in manners, and have some of the most warped sense of their idea of Christianity I have ever experienced. When Becky ran away they let her stay there, in the same bedroom and bed as Matt, yet insisted to me over and over that there was no way those two were having sex in the bedroom. Mom was adamant that Matt knew the house rules and wouldn't break them. Man, either she was in serious denial or a liar, or both. They also told us that taking Becky into their house instead of telling her to come home and deal with her problems was, "The right thing to do." She lied and told them I was abusive and that I made her move all the furniture when she had to vacuum. At the time, after the tornado ripped the roof off over our heads, all we had in the living room was a rocking chair and a coffee table. They told her I was cruel for making her do chores - their kids didn't have chores, for making her go to school - their kids had been taken out of school for missing too much, and they were being haphazardly home schooled; and, after she asked to get her license so she could get a part time job (something I didn't do for her siblings because Tampa has public transportation and we were in walking distance of more than enough places for a teen to get jobs), I told her she had to get a job. She wanted to come home from school and go to Matt's. I made sure her chores and homework were done first. That's what my Mom did, and what I did for her siblings, and it's what I expected from her. Matt's mom didn't make the kids do anything, and that included getting out of bed to go to school. No chores. No responsibilities.
So Becky got mad because I was concerned about the grandkids living in a potentially dangerous environment and called DFS. This led to her telling me I would never see my grandchildren again. Ironically enough this happened only a year and a half after she finally started talking to us after a 4 1/2 year period of no communication once she left the house here.
This is harder on me than just about any of the other stressors in my life. Living so close, hearing the kids laugh and play, and even seeing them on occasion, yet not being allowed to talk to them or contact them, is about ripping my heart out. I just don't get it.
It's one of the reasons we're looking to move. One of the biggest reasons.
Before we can move, there are a few conditions that need to be met....
- I need a pain doctor. A pain doctor who will treat me like a real honest-to-God patient with real pain.
- We need land with enough room for my chickens, and a garden, and perhaps maybe even a pond. At least a couple acres. It needs to be more level than where we are now. Hubby's diabetic neuropathy is getting worse and we need property that will be a lot easier for him to care for. If the land is flat enough, I could possibly even do the mowing on the rider mower.
- We need to sell this place for enough to be able to afford to have either no mortgage at all on our new place, which will probably be smaller, or at least a small mortgage of less than $20K. I don't want a huge payment. We're not rich. I'd like him to be able to retire and if we can get a small place on a piece of land that is less than $70K we can live on my disability, his retirement and his Social Security and he won't have to work. He will, however, need to find something to do or I'll go bats. He would, too. He has to be busy.
I don't know....the whole thing is just.....frustrating, painful, irritating....will it never end?
No wonder my head screams at me.
Sunday, March 14, 2010
Applying for disability
I have atypical facial pain, occipital neuralgia, sensitivity to light and sound, migraines, chronic depression, PTSD, OCD and borderline personality disorder. What got my disability granted was my psychiatrist writing a letter to the judge telling him how I met the SS guidelines for granting disability based on depression. I found the guidelines, highlighted them and put them in with my paperwork when I went in for my hearing. The judge saw them and asked me who highlighted it. I told him I did. He said that since those were the Social Security Administration's guidelines, if I had someone who would back me up in writing, they would have to give me disability.
I was refused based on the chronic pain even though I am taking Methadone for it based on my allergies and sensitivity to several medications. I cannot practice as a nurse on narcotics but my pain doc (not this one, the second one - or was it the third one?) told me I could get an exemption. I asked him if he'd like someone on Methadone who sleeps half the day or more taking care of his mom, or his kid, or his wife, and he looked at me like I was insane. Still, he insisted this wasn't something that qualified me as disabled, and the SSA agreed. They said I was impaired, not disabled. Well, impaired nurses can go to prison. Never mind that my attention span is about 5 minutes long, that I can nod off sitting up talking to someone, and that I forget things a minute after I see or say them; I wasn't safe practicing as a nurse and I knew it.
You have to have worked at least 10 "quarters" or "credits" in the last 10 years to qualify for disability if you are 31 or older. I'm not sure how long you've been out of work; this might influence whether you qualify for Federal disability payments or if you need to apply for SSI.
85%-90% of all applicants are denied the first time around. It is one way they filter out slackers. Unfortunately, it also does a lot of damage to people who need the benefits and are truly disabled. It is important for you to ask for a hearing as soon as you are denied. Then, you start collecting what you will need to back up your claim.
I was refused based on the chronic pain even though I am taking Methadone for it based on my allergies and sensitivity to several medications. I cannot practice as a nurse on narcotics but my pain doc (not this one, the second one - or was it the third one?) told me I could get an exemption. I asked him if he'd like someone on Methadone who sleeps half the day or more taking care of his mom, or his kid, or his wife, and he looked at me like I was insane. Still, he insisted this wasn't something that qualified me as disabled, and the SSA agreed. They said I was impaired, not disabled. Well, impaired nurses can go to prison. Never mind that my attention span is about 5 minutes long, that I can nod off sitting up talking to someone, and that I forget things a minute after I see or say them; I wasn't safe practicing as a nurse and I knew it.
You have to have worked at least 10 "quarters" or "credits" in the last 10 years to qualify for disability if you are 31 or older. I'm not sure how long you've been out of work; this might influence whether you qualify for Federal disability payments or if you need to apply for SSI.
85%-90% of all applicants are denied the first time around. It is one way they filter out slackers. Unfortunately, it also does a lot of damage to people who need the benefits and are truly disabled. It is important for you to ask for a hearing as soon as you are denied. Then, you start collecting what you will need to back up your claim.
- Get copies of ALL your medical records from each doctor who has treated your disability. Your primary doc, a neurologist, a cardiologist, a psychiatrist, a pain doc, a surgeon - anyone you've seen. The Freedom of Information Act states that if you ask, in writing, for a copy of your medical records, they are required to provide them within 30 days. They cannot refuse. They can charge you a "reasonable" fee for copying - I had to pay my primary doc's office $15; none of the other docs charged me anything. Go through and make sure you're not missing important stuff like what meds you're on, what your diagnosis is, how often you visit, any emergency calls, that kind of stuff.
- Request copies of any and all scans, x-rays, lab tests, biopsies, or the like that confirm your diagnosis. Again, request it in writing and sign the request. Ask the place that did them if you can remember. It cuts out the middle man.
- Make a list of all your meds and when you take them. List side effects - it makes you sleepy, makes you stupid, makes you clumsy, affects your coordination, affects your ability to drive, affects your sleep/wake cycle, and so on.
- Keep a medication diary. What do you take when? List PRN meds and why you need them as well as how they make you feel and if you get the relief you need.
- Keep a daily diary. What's your normal day like? Are you limited by your condition/situation? Can you drive? Can you do what needs to be done at home without reminders or assistance? Have members of your family had to pick up the slack between what you used to do and what you can do now? How is your life today compared to how it was before you got sick? Do you miss out on family celebrations....birthday parties, Christmas, reunions, that kind of thing? Can you tolerate the things you used to tolerate?
- Keep your appointments. If you need to cancel or reschedule, keep track of when and why. Call the doc and explain what's going on; don't just blow off an appointment if you feel crappy. Put it in your diary.
- Make copies of all the paperwork you have and send it to Social Security. There are copiers in their offices that you can use for free so you don't have to pay for the copies. Keep the office up to date on all the changes in your case. They won't come looking for this, and they make their decision based on what they have in front of them.
- Don't give up. Prepare for a fight. Determine how far you are willing to go before hiring an attorney. I decided that if I didn't make it on my first hearing I would go ahead and get one. It turned out I didn't need it. I got approved after the letter my shrink sent to the judge after my first hearing.
Thursday, January 21, 2010
day 1572 - a new year
Well, here we are in January, 4.5 years after the beginning of my journey with atypical facial pain. Gosh, it seems like forever some days; others, it seems like just yesterday I was doing normal things in a normal way. Heck, I don't even know what normal is any more.
The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin. They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep. It really makes no difference.
My ability to be independent has been altered. I can't always take myself to the doctor or go shopping or take care of the house alone any more. I need help. I don't always go to bed with a clean kitchen. I can't remember the last time I cleaned the house really well. We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink. I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper. The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time. I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance. What I often want to do is tell people to leave me alone and go away. I can't do that. I need my family and they need me. I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me. It's a tough choice to make.
I'm gonna go rest.
The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin. They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep. It really makes no difference.
My ability to be independent has been altered. I can't always take myself to the doctor or go shopping or take care of the house alone any more. I need help. I don't always go to bed with a clean kitchen. I can't remember the last time I cleaned the house really well. We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink. I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper. The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time. I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance. What I often want to do is tell people to leave me alone and go away. I can't do that. I need my family and they need me. I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me. It's a tough choice to make.
I'm gonna go rest.
Monday, December 14, 2009
day 1533 - new neurologist
He's a smart man.
He looked at all I had on the information sheet I take to all my new docs, listened to me, listened to hubby, asked a few questions, did a cursory exam, and left everything the way it is.
My only concern is that he didn't do any kind of exam at all on my head or face. How can he know what kind of pain I'm having if he doesn't check it out for himself? Still, as much as those things hurt, I was kinda glad.
He refilled my Maxalt. I see him again in 6 months.
At least he believed me and took what I said at face value. This is good, because we've done enough stuff to know where we are and what can - and cannot - be done. We've pretty much been through the wringer and tried just about all that can be tried.
So now we're back to a primary doc, a pain doc, a neurologist, and a shrink. Status quo has been re-established.
Migraine yesterday. Took a Maxalt and had to drive home. There was no way I could have done it without the pill. I hate driving after I take those buggers but at least I didn't have far to go. We were only at WMart.
And there we have it.
He looked at all I had on the information sheet I take to all my new docs, listened to me, listened to hubby, asked a few questions, did a cursory exam, and left everything the way it is.
My only concern is that he didn't do any kind of exam at all on my head or face. How can he know what kind of pain I'm having if he doesn't check it out for himself? Still, as much as those things hurt, I was kinda glad.
He refilled my Maxalt. I see him again in 6 months.
At least he believed me and took what I said at face value. This is good, because we've done enough stuff to know where we are and what can - and cannot - be done. We've pretty much been through the wringer and tried just about all that can be tried.
So now we're back to a primary doc, a pain doc, a neurologist, and a shrink. Status quo has been re-established.
Migraine yesterday. Took a Maxalt and had to drive home. There was no way I could have done it without the pill. I hate driving after I take those buggers but at least I didn't have far to go. We were only at WMart.
And there we have it.
Monday, November 23, 2009
day 1512
Just in case anyone was wondering how long I have been in possession of my current pain situation and if I was still keeping track....well, I am.
And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....
What a fascinating life I lead!
And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....
What a fascinating life I lead!
More and more
Well, what I had ended up being a case of strep throat, probably a sinus infection, and some good old H1N1 - thankfully, a milder strain. I've missed several doctor's appointments in the past 3 weeks and rescheduled them...some two or three times.
I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.
And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.
It's not fun getting old, but it's better than not being here.
Sorry....I'm a bit low on energy.
I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.
And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.
It's not fun getting old, but it's better than not being here.
Sorry....I'm a bit low on energy.
Sunday, November 08, 2009
flu, strep or just a bad cold?
I don't like having what I have.
I'm not sure if it's the pig flu or strep or what, but I'm exhausted; my ankle swelling will not go down no matter what I do; I have a dry and scratchy throat; I'm coughing up lovely green-yellow small chunks of gak; and I could sleep till 2011 if I didn't have to go to the bathroom so much.
It started earlier this week with a scratchy throat. It was Monday, I remember, because hubby and I had obtained tickets to Celtic Thunder and I decided we were going barring anything short of a nuclear accident. It was followed by dryness to the point of painful swallowing. I didn't have a fever and my lymph glands weren't swollen, so I thought it was probably Mr. Pig in the flesh coming for a visit.
Now I've got the throat thing, the cough, the hocking up icky stuff, and - as usual with any irritation to my head or neck or any combination thereof, the tinnitus is nice and loud just in case I forget it's there while I'm focusing on how rotten I feel. I have a negative value of energy at this point. Yesterday I dozed off eating chicken noodle soup and spilled some on my lap. Today I spilled a small amount of diet soda on the thankfully sealed keyboard - yep, dozed off again. It seems that I can never get enough sleep. This isn't how I envisioned my life would be when I hit 49, but here we are.
I cancelled 3 appointments this week so I'll have to make them up. One will be Monday with the primary doc and since hubby has it now as well, and he has his regular diabetic checkup, we'll just hit her up all at once. I was supposed to see my surgeon today and once hubby got me awake enough to dial the phone and understand what I was doing, I called and rescheduled that one as well.
This is year 5 with my obnoxious visitor. Had you asked me in the beginning of 2004 I'd have told you that by 2010 we'd have the house paid off and own it outright so hubby could retire and spend some time working for himself instead of having to go punch a clock. We'd have my hospital insurance and I'd be enjoying the job I had just started 3 1/2 months before this hit me like a ton of bricks, knocking me out of the workforce and to the fringes of society as well.
I've learned a lot about the medical profession after spending 4+ years on this side of the fence. I had, like probably most medical professionals, a tainted view of how we treated patients. I found out really quickly that if you don't physically possess a disorder that shows that your body should be in pain, you will be looked on as a drug addict and/or drug seeker, as someone who is a whiner and wants to escape reality, and as a slacker who wants to live off the government. Even people who knew you when you were well won't believe you are in the pain you say you're in. I was ashamed to have been a nurse for so long when I was on the receiving end of some of the most rude, degrading, downright hateful treatment I've had in my adult life. I've been refused treatment and labeled as a drug-seeker by the hospital closest to our home. I had a headache doctor drop me because I had a period of time, before the pain was under control, where riding for an hour to his office to wait and spend half an hour there before the hour's ride back was just flat too much...he said I missed too many appointments. I also had to reschedule a lumbar puncture due to the pain he obviously had no intention of even desiring to understand, and the hospital got upset too. Now this is a hospital that was started by a nun who wanted all people to receive compassionate care. I dare say she'd have been a bit upset at how I was treated. When I was put on narcotics for pain control and had to have the obligatory psychiatrist's management and diagnoses, and my neurologist found out I had an anxiety disorder, he was all of a sudden convinced that my whole problem was because of the anxiety and he basically wrote me off. This was the same doctor whose wife I cared for while she was dying. The family liked how I cared for her, and he had seemed to be a caring doctor till he saw those words; it was like the lights had gone out in his brain after that.
It amazes me how those of us with invisible diagnoses are treated, not only by the general public, but by the medical profession. Honestly, they should be ashamed of themselves. We are taught that pain is subjective, and that if a patient says they are in pain, they are in pain. Not so. If the care provider thinks the patient is a nut, or a drug seeker, or both, they treat you like a liar, a drug addict, a piece of garbage to be swept out the door with the rest of the trash. It's a poor reflection on the American health care system. It's appalling.
It seems I'm on a rant. At least it's making me feel better.
I've gained back most of the weight I lost with my gastric bypass surgery. Part of it is enforced lack of activity. Exercise causes pain because of the constant motion. The sound of the video, turned up loud enough to hear, causes pain. The glare from the TV hurts. The other thing is that the medications I'm on can cause edema and increased appetite. I promised myself when I had the surgery that I'd not gain the weight back.
I lied.
I'm disappointed in myself even though I know it's not all my fault. I know I'm a stress-eater and the ten years we've been married has had relatively few stress-free months. Accidents, storm issues, a tornado, an estranged daughter and family, the breakup of my son's marriage, job losses and gains, a son and a son-in-law now diagnosed with seizure disorder, a grandson who had just turned 2 and had meningitis, possible encephalitis, and we weren't sure if he was going to make it...now a granddaughter born to my still-married son and his girlfriend while the children from his marriage live with his estranged wife's two sets of parents...
Still, I should be able to relax and slow down on the eating. The fact of the matter is, I can't. It is a well-entrenched coping mechanism I've learned and learned well in my almost 50 years on this planet.
Eh, I'm done for now. Time to go put my feet up and read the captioning on the TV for a while.
I'm not sure if it's the pig flu or strep or what, but I'm exhausted; my ankle swelling will not go down no matter what I do; I have a dry and scratchy throat; I'm coughing up lovely green-yellow small chunks of gak; and I could sleep till 2011 if I didn't have to go to the bathroom so much.
It started earlier this week with a scratchy throat. It was Monday, I remember, because hubby and I had obtained tickets to Celtic Thunder and I decided we were going barring anything short of a nuclear accident. It was followed by dryness to the point of painful swallowing. I didn't have a fever and my lymph glands weren't swollen, so I thought it was probably Mr. Pig in the flesh coming for a visit.
Now I've got the throat thing, the cough, the hocking up icky stuff, and - as usual with any irritation to my head or neck or any combination thereof, the tinnitus is nice and loud just in case I forget it's there while I'm focusing on how rotten I feel. I have a negative value of energy at this point. Yesterday I dozed off eating chicken noodle soup and spilled some on my lap. Today I spilled a small amount of diet soda on the thankfully sealed keyboard - yep, dozed off again. It seems that I can never get enough sleep. This isn't how I envisioned my life would be when I hit 49, but here we are.
I cancelled 3 appointments this week so I'll have to make them up. One will be Monday with the primary doc and since hubby has it now as well, and he has his regular diabetic checkup, we'll just hit her up all at once. I was supposed to see my surgeon today and once hubby got me awake enough to dial the phone and understand what I was doing, I called and rescheduled that one as well.
This is year 5 with my obnoxious visitor. Had you asked me in the beginning of 2004 I'd have told you that by 2010 we'd have the house paid off and own it outright so hubby could retire and spend some time working for himself instead of having to go punch a clock. We'd have my hospital insurance and I'd be enjoying the job I had just started 3 1/2 months before this hit me like a ton of bricks, knocking me out of the workforce and to the fringes of society as well.
I've learned a lot about the medical profession after spending 4+ years on this side of the fence. I had, like probably most medical professionals, a tainted view of how we treated patients. I found out really quickly that if you don't physically possess a disorder that shows that your body should be in pain, you will be looked on as a drug addict and/or drug seeker, as someone who is a whiner and wants to escape reality, and as a slacker who wants to live off the government. Even people who knew you when you were well won't believe you are in the pain you say you're in. I was ashamed to have been a nurse for so long when I was on the receiving end of some of the most rude, degrading, downright hateful treatment I've had in my adult life. I've been refused treatment and labeled as a drug-seeker by the hospital closest to our home. I had a headache doctor drop me because I had a period of time, before the pain was under control, where riding for an hour to his office to wait and spend half an hour there before the hour's ride back was just flat too much...he said I missed too many appointments. I also had to reschedule a lumbar puncture due to the pain he obviously had no intention of even desiring to understand, and the hospital got upset too. Now this is a hospital that was started by a nun who wanted all people to receive compassionate care. I dare say she'd have been a bit upset at how I was treated. When I was put on narcotics for pain control and had to have the obligatory psychiatrist's management and diagnoses, and my neurologist found out I had an anxiety disorder, he was all of a sudden convinced that my whole problem was because of the anxiety and he basically wrote me off. This was the same doctor whose wife I cared for while she was dying. The family liked how I cared for her, and he had seemed to be a caring doctor till he saw those words; it was like the lights had gone out in his brain after that.
It amazes me how those of us with invisible diagnoses are treated, not only by the general public, but by the medical profession. Honestly, they should be ashamed of themselves. We are taught that pain is subjective, and that if a patient says they are in pain, they are in pain. Not so. If the care provider thinks the patient is a nut, or a drug seeker, or both, they treat you like a liar, a drug addict, a piece of garbage to be swept out the door with the rest of the trash. It's a poor reflection on the American health care system. It's appalling.
It seems I'm on a rant. At least it's making me feel better.
I've gained back most of the weight I lost with my gastric bypass surgery. Part of it is enforced lack of activity. Exercise causes pain because of the constant motion. The sound of the video, turned up loud enough to hear, causes pain. The glare from the TV hurts. The other thing is that the medications I'm on can cause edema and increased appetite. I promised myself when I had the surgery that I'd not gain the weight back.
I lied.
I'm disappointed in myself even though I know it's not all my fault. I know I'm a stress-eater and the ten years we've been married has had relatively few stress-free months. Accidents, storm issues, a tornado, an estranged daughter and family, the breakup of my son's marriage, job losses and gains, a son and a son-in-law now diagnosed with seizure disorder, a grandson who had just turned 2 and had meningitis, possible encephalitis, and we weren't sure if he was going to make it...now a granddaughter born to my still-married son and his girlfriend while the children from his marriage live with his estranged wife's two sets of parents...
Still, I should be able to relax and slow down on the eating. The fact of the matter is, I can't. It is a well-entrenched coping mechanism I've learned and learned well in my almost 50 years on this planet.
Eh, I'm done for now. Time to go put my feet up and read the captioning on the TV for a while.
Monday, November 02, 2009
plodding along
Well, my arm is healing up pretty well. The scars are bigger and longer than I had expected but I remember my hubby telling me that the surgeon said there was a bit of a mess in the upper blockage area and he had to do more than he expected. The tingling, numbness and pain in that arm and hand are gone.
Now, it's a matter of scheduling surgery for the right arm. I was crocheting the other day and honestly, I didn't get two rows done before my thumb and first two fingers had gone numb. I was thinking it had let up, but that's because I've not been doing a lot of the things I had done before. It's still there, all right. I'm glad he didn't even think of doing the two together. I'd not have been able to do anything at all.
The edema in my feet from the Methadone is worse now than it has been. For the last couple weeks I've had almost constant swelling and it has been so bad a couple times I couldn't get shoes on. That along with the weight gain are the two worst side effects of the drug that keeps my pain in check. Given the choice, I'd take the swelling and increased weight over the pain any day. It's just no fun having to choose.
I'm not sleeping again. A couple hours here, a few hours there, and that's all I get. It's been 4 years since I've slept well at night. Man, do I miss it. Now if I go to bed I'll sleep for a bit and then get up, or I'll lay there for a few hours and decide the heck with it and get up. There's no sense in laying there all night, listening to hubby sleep. It gets frustrating.
After the first of the year it will be time to deal with my teeth. I seriously need a cleaning and such, but I can't be awake because those hypersensitive nerves of mine would have me clawing at the ceiling. We got a flyer or two in the mail about a place towards St. Louis that does sedation dentistry. I'm going to check them out and see if they can do my teeth. We've got the insurance; I might as well get it done. Otherwise, my teeth are gonna start falling out of my mouth. If they can knock me out I have the feeling it will be fine. It's either that or dentures....
I've been able to sew more in the past several weeks. I can't explain why but sometimes the machines really hurt my eyes and ears and head. Right now, they aren't doing that, so I'm taking advantage of it and sewing away. I love sitting at the machine. Being able to create things has always been a sort of therapy for me.
So, basically nothing new here on the home front. Since I believe, though, that nothing stays the same for long, something is bound to happen soon.
Now, it's a matter of scheduling surgery for the right arm. I was crocheting the other day and honestly, I didn't get two rows done before my thumb and first two fingers had gone numb. I was thinking it had let up, but that's because I've not been doing a lot of the things I had done before. It's still there, all right. I'm glad he didn't even think of doing the two together. I'd not have been able to do anything at all.
The edema in my feet from the Methadone is worse now than it has been. For the last couple weeks I've had almost constant swelling and it has been so bad a couple times I couldn't get shoes on. That along with the weight gain are the two worst side effects of the drug that keeps my pain in check. Given the choice, I'd take the swelling and increased weight over the pain any day. It's just no fun having to choose.
I'm not sleeping again. A couple hours here, a few hours there, and that's all I get. It's been 4 years since I've slept well at night. Man, do I miss it. Now if I go to bed I'll sleep for a bit and then get up, or I'll lay there for a few hours and decide the heck with it and get up. There's no sense in laying there all night, listening to hubby sleep. It gets frustrating.
After the first of the year it will be time to deal with my teeth. I seriously need a cleaning and such, but I can't be awake because those hypersensitive nerves of mine would have me clawing at the ceiling. We got a flyer or two in the mail about a place towards St. Louis that does sedation dentistry. I'm going to check them out and see if they can do my teeth. We've got the insurance; I might as well get it done. Otherwise, my teeth are gonna start falling out of my mouth. If they can knock me out I have the feeling it will be fine. It's either that or dentures....
I've been able to sew more in the past several weeks. I can't explain why but sometimes the machines really hurt my eyes and ears and head. Right now, they aren't doing that, so I'm taking advantage of it and sewing away. I love sitting at the machine. Being able to create things has always been a sort of therapy for me.
So, basically nothing new here on the home front. Since I believe, though, that nothing stays the same for long, something is bound to happen soon.
Friday, September 04, 2009
two weeks out
I'm two weeks out from my first carpal tunnel/median nerve release surgery.
I am so sick of the bandages already I could scream. The skin underneath is dry and itchy and I don't like dry and itchy. I want to rip the blasted thing off and take a shower, except I don't have more of the cotton cast wrap so I can't. The 4x4 underneath the cast wrap is rough at the edges so it makes me itch and the skin is irritated there.
Can you tell it's a whiny kind of day?
At least I've been doing good with the extra pain meds. Total, for the two weeks, I've taken 37 Lortab. I've not had to take more than 1 at a time since 6 days after the surgery. I think that's pretty darn good.
I'm driving again, albeit carefully and slowly.
They're giving me two months' worth of Methadone prescriptions now. I take them both to the pharmacy and they fill one, then I call when I need the other one filled. Schedule two drugs have to be done this way.
I saw the nurse practitioner Wednesday. She's nice.
The ringing in my ears is bugging me more now than anything else. It just never, ever stops. I'd like to disconnect my hearing sometimes, when the ringing gets so loud that it's all I can hear or think about. It interferes with my hearing, with things I can watch or not watch on TV, and all kinds of other fun stuff. I'd really like to have the ringing not be so loud, but I am so over having to take drugs I'm not willing to go and have them give me something else to pop during the day.
I'm not sleeping well. This morning I did something unheard of and, after oversleeping and not getting up for my 6am pill, I stumbled out at 8am, fed the chickens, came back in, forgot the pill again, and sat down in the recliner; there, I passed out until noon. I'm definitely sleep-deprived. I seriously think I could sleep for a week, only waking up to take drugs, drink something, and go pee. However, there are chores to do and kids to see and all that other jazz, so it's not happening. No way.
Enough is enough already. I don't know why I've been handed this pile of stuff. Apparently God has a lot of confidence in me. I guess I'd better stop thinking I'm so weak.
I am so sick of the bandages already I could scream. The skin underneath is dry and itchy and I don't like dry and itchy. I want to rip the blasted thing off and take a shower, except I don't have more of the cotton cast wrap so I can't. The 4x4 underneath the cast wrap is rough at the edges so it makes me itch and the skin is irritated there.
Can you tell it's a whiny kind of day?
At least I've been doing good with the extra pain meds. Total, for the two weeks, I've taken 37 Lortab. I've not had to take more than 1 at a time since 6 days after the surgery. I think that's pretty darn good.
I'm driving again, albeit carefully and slowly.
They're giving me two months' worth of Methadone prescriptions now. I take them both to the pharmacy and they fill one, then I call when I need the other one filled. Schedule two drugs have to be done this way.
I saw the nurse practitioner Wednesday. She's nice.
The ringing in my ears is bugging me more now than anything else. It just never, ever stops. I'd like to disconnect my hearing sometimes, when the ringing gets so loud that it's all I can hear or think about. It interferes with my hearing, with things I can watch or not watch on TV, and all kinds of other fun stuff. I'd really like to have the ringing not be so loud, but I am so over having to take drugs I'm not willing to go and have them give me something else to pop during the day.
I'm not sleeping well. This morning I did something unheard of and, after oversleeping and not getting up for my 6am pill, I stumbled out at 8am, fed the chickens, came back in, forgot the pill again, and sat down in the recliner; there, I passed out until noon. I'm definitely sleep-deprived. I seriously think I could sleep for a week, only waking up to take drugs, drink something, and go pee. However, there are chores to do and kids to see and all that other jazz, so it's not happening. No way.
Enough is enough already. I don't know why I've been handed this pile of stuff. Apparently God has a lot of confidence in me. I guess I'd better stop thinking I'm so weak.
Tuesday, April 28, 2009
more and less
The Methadone is doing pretty well. I'm under decent pain control with the exception of my left arm. I'm not sleeping well, or at least not more than a couple hours at a time, but I'm making it.
I've been sewing things in preparation for the new granddaughter due next month. I'm workin on her diapers now. Her parents decided to give cloth diapers a try; I'm making the infant size first so if they decide to go with disposables I haven't used as much fabric as I would if I made the full set of older baby diapers. I'm also making myself a new dress. It's a lot like my other dresses but the neckline is less likely to leave me flashing than the other one. My bosom is smaller than some, and the lower necklines have far too much fabric for my needs. I'm hoping this one is more to my liking.
I've been having pain in my right forearm and upper arm for over 2 months now. I went to the doctor and found out that I have a neuroma on the nerve that ennervates my left arm, and the growth is right by my left pinkie. It makes my whole arm hurt, sometimes when I'm just sitting still and doing nothing. Apparently the tumor has been getting bigger and bigger slowly and now it's big enough to cause more pain than I can tolerate on a daily basis, even with the meds I'm on. So anyhow, I see a hand surgeon on May 23 to arrange to get the growth removed. This is definitely not high on my list of things to look forward to, but it needs to be done, and I'll get it done. It's going to make dishes and chicken chores interesting for a while, but at least maybe I'll feel better.
I made a sleeve cover for my left arm so that I can stop picking on it. If the sores heal up all the way that will lower my risk of infection when I have the surgery. It's hard to explain, even to my internest/primary doc, that a compulsion is just that - a compulsion. I can't just decide NOT to do it because I know I shouldn't. She suggested hypnotism and seemed a bit upset when I told her I don't do that. I believe it's opening a door to the demonic and I don't want to take that chance. She didn't seem to understand. She's of the opinion that it can help people. I don't believe that it's an option for me and I'd rather not go that way, whether or not she is happy with it.
When my hubby was laid off in February, I was approved for Prescription Assistance for my Lexapro. It saved an awful lot of money since Lexapro is just shy of $150 a month without insurance. Since hubby is back at work, we won't need the assistance any more, so I will tell my psychiatrist to cancel the prescription assistance and let someone else have it who needs it. There's no sense in using it if we don't need it.
I spoke with a cousin last night. She has nerve issues as well in the same arm as mine. I'm wondering if it's genetic. That might explain the headaches and all. It could very well be.
Other than that, life is status quo. The pain is here every day, and I take my medicines like I should, and pray for the courage and strength to go on and to be strong and to be thankful for a loving family and good insurance and all the blessings I've been given. It could be a lot worse.
I guess that's all for now.
I've been sewing things in preparation for the new granddaughter due next month. I'm workin on her diapers now. Her parents decided to give cloth diapers a try; I'm making the infant size first so if they decide to go with disposables I haven't used as much fabric as I would if I made the full set of older baby diapers. I'm also making myself a new dress. It's a lot like my other dresses but the neckline is less likely to leave me flashing than the other one. My bosom is smaller than some, and the lower necklines have far too much fabric for my needs. I'm hoping this one is more to my liking.
I've been having pain in my right forearm and upper arm for over 2 months now. I went to the doctor and found out that I have a neuroma on the nerve that ennervates my left arm, and the growth is right by my left pinkie. It makes my whole arm hurt, sometimes when I'm just sitting still and doing nothing. Apparently the tumor has been getting bigger and bigger slowly and now it's big enough to cause more pain than I can tolerate on a daily basis, even with the meds I'm on. So anyhow, I see a hand surgeon on May 23 to arrange to get the growth removed. This is definitely not high on my list of things to look forward to, but it needs to be done, and I'll get it done. It's going to make dishes and chicken chores interesting for a while, but at least maybe I'll feel better.
I made a sleeve cover for my left arm so that I can stop picking on it. If the sores heal up all the way that will lower my risk of infection when I have the surgery. It's hard to explain, even to my internest/primary doc, that a compulsion is just that - a compulsion. I can't just decide NOT to do it because I know I shouldn't. She suggested hypnotism and seemed a bit upset when I told her I don't do that. I believe it's opening a door to the demonic and I don't want to take that chance. She didn't seem to understand. She's of the opinion that it can help people. I don't believe that it's an option for me and I'd rather not go that way, whether or not she is happy with it.
When my hubby was laid off in February, I was approved for Prescription Assistance for my Lexapro. It saved an awful lot of money since Lexapro is just shy of $150 a month without insurance. Since hubby is back at work, we won't need the assistance any more, so I will tell my psychiatrist to cancel the prescription assistance and let someone else have it who needs it. There's no sense in using it if we don't need it.
I spoke with a cousin last night. She has nerve issues as well in the same arm as mine. I'm wondering if it's genetic. That might explain the headaches and all. It could very well be.
Other than that, life is status quo. The pain is here every day, and I take my medicines like I should, and pray for the courage and strength to go on and to be strong and to be thankful for a loving family and good insurance and all the blessings I've been given. It could be a lot worse.
I guess that's all for now.
Tuesday, September 23, 2008
plodding along
Once again I am limited by the medication I take. The new sleeping pill is great. It helps me sleep better than I've slept in a while. However, since it is a benzodiazepine like the Xanax is, I really have to be careful how much, where, when, and how fast I drive or do other things. It has quite an effect on my concentration and reaction time.
I now go no further than the closest larger towns (about 15 miles) without an escort, and when I do go to town, I drive no faster than 45 or, on a straightaway I know well, I can go 50 miles an hour.
The effect on my personality and psyche of losing this part of my independence has been significant but I have realized that I need to be careful and take responsibility of what I do with what God has given me. If that means I don't go tearing off to the mall any time I want to, then that's what it means. I am learning patience - again. I knew I wasn't done with that yet.
I'm also making little mistakes I hadn't made in a while like bonking my head on things, dropping things, cutting my fingertips while chopping up food, and the like. It reminds me I need to slow down and enjoy myself and not be in such a hurry.
There are lessons all around us if we just stop and listen...
I now go no further than the closest larger towns (about 15 miles) without an escort, and when I do go to town, I drive no faster than 45 or, on a straightaway I know well, I can go 50 miles an hour.
The effect on my personality and psyche of losing this part of my independence has been significant but I have realized that I need to be careful and take responsibility of what I do with what God has given me. If that means I don't go tearing off to the mall any time I want to, then that's what it means. I am learning patience - again. I knew I wasn't done with that yet.
I'm also making little mistakes I hadn't made in a while like bonking my head on things, dropping things, cutting my fingertips while chopping up food, and the like. It reminds me I need to slow down and enjoy myself and not be in such a hurry.
There are lessons all around us if we just stop and listen...
Monday, August 25, 2008
I just realized
I'm going into my 4th year with this wonderful disability.
I know a lot more about it than I did, which is still pitifully little.
That is because there is pitifully little to be known.
Without the Provigil, the sleep issues are still right up front. I'm going to try to go to bed here soon and see if I can get some sleep. I have been at least making the attempt several nights a week. The thing is, I've been picking a lot now too and that doesn't necessarily help. If I can't sleep and I go to bed, I tend to lie there and pick. My skin is a mess. It's from little bug bites and cat bites and scratches and goodness knows what.
I see the psychiatrist on Wednesday. I had to reschedule last month because of a honker headache. Oh, they're always fun.
The more stress I'm under, the worse the symptoms of the OCD and borderline personality disorder are, and they're not the best right now. Picking, obsessing, procrastinating, self-degradation...That reminds me. In a minute I need to look something up.
The situation with Becky is still bad. The other two and I are getting along, but not necessarily all that well with each other.
It's hard to believe I've been in the midst of this for 3 years now. I didn't think I could handle it before. I guess I proved myself wrong.
I know a lot more about it than I did, which is still pitifully little.
That is because there is pitifully little to be known.
Without the Provigil, the sleep issues are still right up front. I'm going to try to go to bed here soon and see if I can get some sleep. I have been at least making the attempt several nights a week. The thing is, I've been picking a lot now too and that doesn't necessarily help. If I can't sleep and I go to bed, I tend to lie there and pick. My skin is a mess. It's from little bug bites and cat bites and scratches and goodness knows what.
I see the psychiatrist on Wednesday. I had to reschedule last month because of a honker headache. Oh, they're always fun.
The more stress I'm under, the worse the symptoms of the OCD and borderline personality disorder are, and they're not the best right now. Picking, obsessing, procrastinating, self-degradation...That reminds me. In a minute I need to look something up.
The situation with Becky is still bad. The other two and I are getting along, but not necessarily all that well with each other.
It's hard to believe I've been in the midst of this for 3 years now. I didn't think I could handle it before. I guess I proved myself wrong.
Thursday, August 07, 2008
med adjustment
Dr. P increased my methadone yesterday. I'm taking 10 mg 3 times a day from now through fall since I'm more busy in the summer due to gardening and the like and my pain has increased a little.
I did manage to drop off the prescription yesterday, but I didn't wait an hour to pick it up. I need to get it next time I'm at WalMart.
I had a few extra pills so I increased the dose yesterday. While the pain is notably better already, I've also noticed a couple other side effects I'm not really thrilled about.
1) I am dead tired almost all the time. I dozed off twice today and spilled my soft drink all over my lap. The first time I also spilled some on the floor. These incidents both necessitated a change of clothes, which is embarrassing. Thank goodness I was at home and not out and about.
2) I forget things. I had something to drink here on the end table by me tonight and went to the refrigerator after doing a couple small things and got more to drink and brought it over here, only discovering that I already had something here when I got to my chair and was ready to sit down.
3) I'm not going to be able to drive for a while at least. The fatigue makes it hard for me to concentrate even long enough to drive to the store. I don't want to take any chances with my life or anyone else's while under the influence of this medication. I can wait to do my shopping and errands until I get a ride.
I'm hoping I'll adjust to this so I don't have to count on other people to get me to the store and back. It would make it very hard to do the things I do on the spur of the moment, like when I run out of thread and go to the store quickly to get whatever color I need and things like that.
Oh well...we live with what we're given.
I did manage to drop off the prescription yesterday, but I didn't wait an hour to pick it up. I need to get it next time I'm at WalMart.
I had a few extra pills so I increased the dose yesterday. While the pain is notably better already, I've also noticed a couple other side effects I'm not really thrilled about.
1) I am dead tired almost all the time. I dozed off twice today and spilled my soft drink all over my lap. The first time I also spilled some on the floor. These incidents both necessitated a change of clothes, which is embarrassing. Thank goodness I was at home and not out and about.
2) I forget things. I had something to drink here on the end table by me tonight and went to the refrigerator after doing a couple small things and got more to drink and brought it over here, only discovering that I already had something here when I got to my chair and was ready to sit down.
3) I'm not going to be able to drive for a while at least. The fatigue makes it hard for me to concentrate even long enough to drive to the store. I don't want to take any chances with my life or anyone else's while under the influence of this medication. I can wait to do my shopping and errands until I get a ride.
I'm hoping I'll adjust to this so I don't have to count on other people to get me to the store and back. It would make it very hard to do the things I do on the spur of the moment, like when I run out of thread and go to the store quickly to get whatever color I need and things like that.
Oh well...we live with what we're given.
Sunday, August 03, 2008
bad couple of weeks
The pressure of the Mississippi River Valley on my head, and inside it as well, has made the past couple of weeks pretty miserable for me. The pain level on my right side is up from a 4 to a pretty steady 4-5 again and I've had to take 1/2 a Lortab a couple times and I took a Maxalt on Friday, I believe. I haven't had a migraine in a while. I wasn't even really sure what this was and was just trying to cover all my bases. Tylenol, then Vicodin, then Maxalt. Progression of reason.
Going outside even to do the chicken stuff has become a greater effort. It's harder to breathe in the increased humidity and by the time I've been out for say, 10 minutes the sweat is pouring down my legs and forehead and I'm feeling a bit sweaty and wondering if I chose the wrong profession.
I see the pain doc this week on Wednesday. I'm going to talk to her about the pain and see if she'd rather have me back off on my activity or increase my dose from 25mg to 30mg a day to compensate for doing more because I feel a bit more human.
I need to get my iron level redrawn. I need to schedule my mammygram and a bone scan. I need to stop by my PCP's office and get more OAB samples so we can find one that works for me, or at least a reasonable facsimile.
I also need to go to the ophthalmologist and take a sample of my needle and thread and handwork and tell him I need the bottom part of my lenses to enable to do that, which it is not doing right now. I can't thread a small machine needle till like the 5th or 6th try. That's not enough. That's why I got the progressive/bifocal lenses. I need to be able to do this. It's part of my therapy.
I miss my life.
Going outside even to do the chicken stuff has become a greater effort. It's harder to breathe in the increased humidity and by the time I've been out for say, 10 minutes the sweat is pouring down my legs and forehead and I'm feeling a bit sweaty and wondering if I chose the wrong profession.
I see the pain doc this week on Wednesday. I'm going to talk to her about the pain and see if she'd rather have me back off on my activity or increase my dose from 25mg to 30mg a day to compensate for doing more because I feel a bit more human.
I need to get my iron level redrawn. I need to schedule my mammygram and a bone scan. I need to stop by my PCP's office and get more OAB samples so we can find one that works for me, or at least a reasonable facsimile.
I also need to go to the ophthalmologist and take a sample of my needle and thread and handwork and tell him I need the bottom part of my lenses to enable to do that, which it is not doing right now. I can't thread a small machine needle till like the 5th or 6th try. That's not enough. That's why I got the progressive/bifocal lenses. I need to be able to do this. It's part of my therapy.
I miss my life.
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