"Where is the moment we needed the most" ~ For me this would have been an awesomely working epidural/lumbar block today that actually took the pain away completely, instead of just numbed it and everything from my belly button down. It was definitely not what my PM wanted it to me, and she doubled it to get some sort of a result because I wasn't responding for the first round....crazy maybe, but I was there anyway..so might as well try to knock it out. It so didn't knock anything out except me. Even though my legs don't work I must of kicked up the leave and lost the magic there.
"You stand in the line just to hit a new low, you're faking a smile with the coffee you go"
This sounds like I need to discuss the deep depression I fell into, it's apparently part of the RSD thing, I kept meaning to call my Doc, per my sweet friends request, but I forget, because that's another wonderful about RSD, and so I haven't done it yet, but it's in my notes of things to do, if I remember to look at them..I know ARGH!
Today in the hospital I had a nurse grab onto my feet to check my strength, problem is I may not have extreme allodynia but still you don't grab the foot of someone who has RSD, and I told her, and she seemed to not really know what the hell it was. I was too exhausted to explain. I did ask her to be very careful with my left limb, that it hurt with not even much pressure. Then there was all the whispering about RSD, the Nurses asking me what my epidural was suppose to do for RSD. I wish that there would be more training for health care professionals in this area...."So you had a bad day...."
Ever notice the chorus of this song makes it seems like the guys telling her, "Yeah what ever you had a bad day, suck it up, I don't want listen to you carry on about it" I feel like things are like that in my house at times. Not all the time,don't get me wrong, I know my hubs loves me, totally loves me, I just don't think he understands what I'm going through and comparatively to his back and neck pain with his damaged discs he figures if he can cope I should be able to cope to, maybe he doesn't feel that way really, maybe I just think he feels that way, often times we don't really talk about how he feels, We seem to rely to heavily on my empathetic abilities.
I'm not sure what a blue sky holiday is, but as long as it doesn't belong having to make a decision between a sympathectomy and a Spinal Cord Stimulator, yay, I don't want that so much. It seems like there's n good choices for this rotten disease. My head is spinning...
Neurological Associations Four F's Diet
Chiropractic or Acupuncture
Lidocain Infusion
Topical Capsaicin or Fentanyl Patches
Hyperbaric Oxygen Chambers
Ketamine Infusions
really the SCS and the Sympatheticomy is my last choice.....
My Aunt has an SCS for her arm RSD, it doesn't help her, it has a 50-70% chance of a better quality of life. Sympatheticomy has a 30-40% chance of working...I don't know it scares me.
So I had a bad day..I can't work up a smile..I'm not allowed to go for a drive unless it's only 30 minutes and with this latest med, I really just can't...and so...where is the magic when I need it the most?
I hate RSD. I hate what it has taken from me (My job, My ability to play with my beys, over 20 pairs of cute shoes, the ability to be the Dancing Queen, the ability to wear a pair of jeans, running, walking, a foot that's not so cold and is a normal size and color...the list goes on)
I hate that makes me rely on my 7 year old son to take Care of me, bring me sweet tea and medicines, sometimes even feminine products...ARGH! It's embarrassing, but I say Thanks you, I'm trying not to be just the giver, it may be that I have this to force me to learn the lesson of being a taker...I'm a horrible taker.
So I had back to PM on 9 September for the final round of lumbar blocks...and then referral to Dartmouth Hitchcock Medical Center in New Hampshire...
I continue to suffer the set backs of this horrible disease that was proven to me that the Medical Community needs to learn more about....I'm printing flyer's to take with me next time.
Showing posts with label crps. Show all posts
Showing posts with label crps. Show all posts
Friday, August 28, 2009
Monday, June 1, 2009
Red Tape & The Unwelcomed
Red Tape....the request for services going to Kentucky to go to Boston to approve...Why is there always a middle man? Shouldn't we streamline, our tax dollars at works...
So why I wait for my Doctor to submit a claim for my Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome with the appropriate ICND 9 Code, on the proper form and fax it to the proper office, so I can get my MRI done on my leg to figure out how much of it actually affected by the RSD, the pain is no longer localized to the knee to toe that I was first diagnosed with...OH no!
Let us stall, and wait "no more lumbar blocks for you", for the First one, my Pain Management (PM) Specialist was on the phone screaming and threatening to report them to someone somewhere for something bad...I'm not sure, but she got the first one to be approved. When it didn't take, when it didn't do what she wanted it to, she came up with a new plan of attack. We were going at it more aggressively to confuse my system, to allow my central nervous system (CNS) to remind my brain what it was like to be pain free, we were going to double tap it (two days of lumbar blocks back to back) and wait a week and double tap it again... so while we wait for the first one to happen, while we wait for the next round to occur the pain is spreading up my thigh into my lower back, and the pain knows no end. I haven't seen my PM in month, I'm living on Neurontin, Amitriptyline, and Tramadol. And while I don't want to get into my "drug habit" so to speak, you must understand, because it speaks volumes of how the body adapts to the medications and they no longer become effective.
The Neurontin makes me what I've come to affectionately call a "Loop Head", my Amitriptyline reads "Take 1 or 2 Tablets at bedtime as needed for Insomnia/Pain" at first one would be enough to knock me out, and I was finally able to sleep. Unfortunately, 1 would not be enough into the second week of pain and not being to sleep without it, and believe me I tried, so I went up to the authorized 2 but it stopped working too, and so I'd take some Tramadol and try to go back to sleep. Now, it's sad to say but neither the Tramadol or the Amitriptyline help with the insomnia or the pain.
I'm not a drug seeker, let's get that straight away, I have three boys, and do not want to spend my days high on narcotics so I miss their daily lives. I only take my medications at bedtime, to sleep, because I need it to function as a parent. So know I'm juggling pain, a pain greater then child birth, with no assistance, and no cure in sight, trying to be the best mom that I can be, and my one glimmer of hope that I have, that I'm trying to hold on to is being bogged down by red tape, and I'm getting the "Unwelcomed" spreading of this monster up into my back!
So why I wait for my Doctor to submit a claim for my Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome with the appropriate ICND 9 Code, on the proper form and fax it to the proper office, so I can get my MRI done on my leg to figure out how much of it actually affected by the RSD, the pain is no longer localized to the knee to toe that I was first diagnosed with...OH no!
Let us stall, and wait "no more lumbar blocks for you", for the First one, my Pain Management (PM) Specialist was on the phone screaming and threatening to report them to someone somewhere for something bad...I'm not sure, but she got the first one to be approved. When it didn't take, when it didn't do what she wanted it to, she came up with a new plan of attack. We were going at it more aggressively to confuse my system, to allow my central nervous system (CNS) to remind my brain what it was like to be pain free, we were going to double tap it (two days of lumbar blocks back to back) and wait a week and double tap it again... so while we wait for the first one to happen, while we wait for the next round to occur the pain is spreading up my thigh into my lower back, and the pain knows no end. I haven't seen my PM in month, I'm living on Neurontin, Amitriptyline, and Tramadol. And while I don't want to get into my "drug habit" so to speak, you must understand, because it speaks volumes of how the body adapts to the medications and they no longer become effective.
The Neurontin makes me what I've come to affectionately call a "Loop Head", my Amitriptyline reads "Take 1 or 2 Tablets at bedtime as needed for Insomnia/Pain" at first one would be enough to knock me out, and I was finally able to sleep. Unfortunately, 1 would not be enough into the second week of pain and not being to sleep without it, and believe me I tried, so I went up to the authorized 2 but it stopped working too, and so I'd take some Tramadol and try to go back to sleep. Now, it's sad to say but neither the Tramadol or the Amitriptyline help with the insomnia or the pain.
I'm not a drug seeker, let's get that straight away, I have three boys, and do not want to spend my days high on narcotics so I miss their daily lives. I only take my medications at bedtime, to sleep, because I need it to function as a parent. So know I'm juggling pain, a pain greater then child birth, with no assistance, and no cure in sight, trying to be the best mom that I can be, and my one glimmer of hope that I have, that I'm trying to hold on to is being bogged down by red tape, and I'm getting the "Unwelcomed" spreading of this monster up into my back!
Saturday, May 30, 2009
Am I Admitting Defeat?
Disabled...
I'm not sure if I'm angry at the word or what images it invokes for me. I have spent 2 months fighting this word. And then yesterday, the thread that I was hanging by the keep me from admitting my defeat, admitting that I am disabled, broke and I cried. Tears rolling down my face as I told my wonderful husband that I can no longer do it all, I am no longer Super Woman, and my kryptonite is RSD.
I always thought that if I got everything right I would be able to return to normal, to the person I was before this diagnosis. I was injured in August 2008, and I clung to the hope that I would get fixed and get better. I now know that I will not, and it's painful to say that, because RSD will not allow me to get better. I'm always going to have balance my activities so as to not cause a flare up, nurse myself, be gentle with myself. It frustrates me, and insults me at the same time.
As I journey through this new half of my life, I need to tell you the small changes that come. First it's noticing that you can't wear just any shoe, because you're foot swells as you walk on it, and if there isn't any room in the shoe then it rubs causing blisters and ulcers on the foot. The next thing I noted is that I couldn't just wear anything, jeans felt so heavy on me. It's not an every day thing, on good days I can still wear jeans, but on bad days it's just too painful. So I adjusted, buying sweat pants, lounge pants and other light cotton pants that wouldn't rub and cause pain. Then it's not being to walk for a long time, frequent breaks are required, my cane is needed, and finally I admitted I need a wheelchair to really be able to get out and do things.
Most of the time I'm house bound, I can't drive more then 15 minutes without pain. Luckily I drive an automatic, because I wouldn't be able to work a clutch. My left foot is constantly in pain, it can vary from a numbing burning pain to a sharp stabbing pain. The RSD has spread from my toes and knees up to my hip. I can barely lay on my left side on a good day, and forget about a bad day. On a good day I can be seen walking to and from my son's school with out my cane as I pick him up from Kindergarten. I can not walk the less then ½ a mile from our house to school though, because that would cause a serious flare up and turn a good day into a bad day.
Here I am again waffling into acceptance.... I'm disabled, but I don't want to be disabled. Who wants to be right. My wonderful group of sisters I have found through facebook tell me I am “re-abled” or “differently abled”, but I still found myself labeling myself as disabled, because I can't do what I use to do, and I can't be who I use to be. I am feeling like saying I am disabled is admitting defeat.
Some days I feel defeated.....
I'm not sure if I'm angry at the word or what images it invokes for me. I have spent 2 months fighting this word. And then yesterday, the thread that I was hanging by the keep me from admitting my defeat, admitting that I am disabled, broke and I cried. Tears rolling down my face as I told my wonderful husband that I can no longer do it all, I am no longer Super Woman, and my kryptonite is RSD.
I always thought that if I got everything right I would be able to return to normal, to the person I was before this diagnosis. I was injured in August 2008, and I clung to the hope that I would get fixed and get better. I now know that I will not, and it's painful to say that, because RSD will not allow me to get better. I'm always going to have balance my activities so as to not cause a flare up, nurse myself, be gentle with myself. It frustrates me, and insults me at the same time.
As I journey through this new half of my life, I need to tell you the small changes that come. First it's noticing that you can't wear just any shoe, because you're foot swells as you walk on it, and if there isn't any room in the shoe then it rubs causing blisters and ulcers on the foot. The next thing I noted is that I couldn't just wear anything, jeans felt so heavy on me. It's not an every day thing, on good days I can still wear jeans, but on bad days it's just too painful. So I adjusted, buying sweat pants, lounge pants and other light cotton pants that wouldn't rub and cause pain. Then it's not being to walk for a long time, frequent breaks are required, my cane is needed, and finally I admitted I need a wheelchair to really be able to get out and do things.
Most of the time I'm house bound, I can't drive more then 15 minutes without pain. Luckily I drive an automatic, because I wouldn't be able to work a clutch. My left foot is constantly in pain, it can vary from a numbing burning pain to a sharp stabbing pain. The RSD has spread from my toes and knees up to my hip. I can barely lay on my left side on a good day, and forget about a bad day. On a good day I can be seen walking to and from my son's school with out my cane as I pick him up from Kindergarten. I can not walk the less then ½ a mile from our house to school though, because that would cause a serious flare up and turn a good day into a bad day.
Here I am again waffling into acceptance.... I'm disabled, but I don't want to be disabled. Who wants to be right. My wonderful group of sisters I have found through facebook tell me I am “re-abled” or “differently abled”, but I still found myself labeling myself as disabled, because I can't do what I use to do, and I can't be who I use to be. I am feeling like saying I am disabled is admitting defeat.
Some days I feel defeated.....
Thursday, May 28, 2009
"The Day The Music Died...." ~ Don McLean
I wasn't driving my Chevy to the levy, but it was like a life altering moment.
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.
RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.
First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.
Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job
I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.
I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.
That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.
I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed
The day my Doctor told me I had RSD, I didn't even know what it was. I had never heard of it, and yet that acronym would have such an impact on my life..one I'm still trying to figure out.
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) the two are interchangeable, they are the same disease. RSD became CRPS, it's such a squirrelly disease, had to pin down. The effects I have can be totally different from another person suffering the disease, but we all, as I have some to realize have one thing in common, the constant chronic pain.
RSD can be caused from something as simple as a bump, a fall, it doesn't take much, but once you have it, it alters your existence. I started this journey with a dislocated knee, and a surgery to clean up scar tissue that had formed around my knee. My hopes were to get my knee back to 100%, return to work full time, and be able to run, hike, bike, play with my kids, get dressed with out the pain. The day I found out I had RSD that dream slowly began to fall apart.
First came the realization that my knee was as good as it was going to get. I would have to figure out how to do the things I wanted to do with it as it, that is if I could get past the pain I felt to do those things.
Secondly, my dream of returning to work crashed down when I was placed on long term disability and had to "mourn" the loss of my job
I wasn't just mourning the loss of my job, I was mourning the loss of my lovely normal life. I shouldn't miss it though, it had already been eight months since I had been "normal", but I was mourning the dream of returning to normalcy.
I was given medication, and no hope for a cure. A hope of remission if..and a hope for some sort of maybe a kind of normal, but nobody could tell me what that normal would be.
That's possibly the hardest thing about RSD, it's day by day, hour by hour, moment to moment. I may feel good enough to walk without my cane, but then I may need a wheel chair. I might try to walk the mall for a few hours, and the next day not be able to leave my bed. Sleep like the dead for a day and a half and not sleep at all for two... I never know, I can't make plans except to go to the Doctors and physical therapy. The constants in my life.
I rail at myself for being broken, and I feel broken physically, mentally, and emotionally, as I try to live with chronic pain...
Day number~ 61 days since diagnosed
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