Well it turns out that two of the docs I was expecting to be seeing while back here in NYC are no longer seeing patients. UGH!!!
And I am about to run out of one of my narcotic prescriptions (the one that causes awful severe withdrawal symptoms) is about to run out... Don't I just feel like fate is on my side? Well actually yes to some degree it is ;) I tricked ya for a sec there didn't I?
It turns out my dad's regular doc likes him a whole lot and is aware of the very negative effects of withdrawal from this particular drug and was willing to see this morning, and my dad only called to make an apt yesterday afternoon! Can't beat that.
SO even though I can't sleep, I am in awful Fybro and Neuro pain and my whole body hates me for working out a lil too hard 2 days ago I got at 9am (which is really really early for me) and went to the Dr.'s office (something I generally really don't like doing).
The NP I saw was nice and my dad's doc was a lot like many other doctors who don't know about this rare and complicated illness. Doctors that have been at their post for 20 years or more want to believe that know the answer and new problems and issues and illness and diagnoses seem to bother them and they can't believe they are true so it has to be something they are familiar with ... but my problem is that what I have isn't what they seem to want it to be. I am NOT bipolar, I DO NOT have MS, I can get depressed at times (chronic severe pain, life long goals destroyed completely, and a body that barely works half the time... if I wasn't depressed there would be something very wrong with me) but all that not withstanding I am NOT suicidal, I DO NOT over take my painkillers (damn it people I barely take them when I need them and never take as much even as I am prescribed), I am NOT addicted, I am NOT in pain because I am depressed BUT I am depressed (sometimes) because I am in pain.
I like the Doc and he did agree to give me a new prescription but I really hate dealing with the medical establishment most of the time. I am sorry for the rant but hey can you blame me after spending 2.5 hours explaining my illness (that has been diagnosed by some of the top specialists in the world or at the very least the entire western hemisphere) and then having to repeatedly defend my treatments (that have been proven to work) and the diagnoses and specialists them selves.
NOW on to the Joke: (my dad told me this after the doctor appointment was over and I found it truly truly hilarious I hope you like it too :)
A woman walks into a veterinary clinic with a duck in her arms and asks to see the vet. He sees her immediately and after examining the duck he says "I am sorry mam your duck is dead. "
The woman becomes very upset and starts to cry and says "Oh know he can't be please please do something!"
"Alright" he replies and he goes to the next room and returns with a Black Labrador. The dog pads over to the duck, sniffs it, and pats at it with his paw, then looks at the vet and shakes his head and walks back out. "I am sorry mam the duck is dead" says the vet to the woman.
Once again she starts to cry "Oh no, oh no he just can't be dead please please isn't there anything else?"
The vet says "OK, OK calm down" and walks to the room across the hall and returns with a very very large tom cat. The cat pads over to the duck and and circles it, and puts one paw on the duck and then the other, batting at it and patting it. Then the cat sniffs it and lets out a cat sneeze and dirty look, turns to the vet and shakes its head and walks out back to its room.
The vet looks at the woman and says "I am sorry mam the duck is dead. It isn't coming back and there isn't anything else I can do".
Sniffling and crying the woman is now resigned and walks out to the reception area to get her bill. In moments she comes back to the vet extremely upset.
"150 dollars?!! For a dead duck are you crazy??!!"
The vet looks at her and says "mam I told you the duck was dead, if you had excepted that it would have been $20, but you required Lab results and a Cat scan"
I hope that made you laugh!!!
TTYallL
Wednesday, September 29, 2010
Monday, September 27, 2010
that old feeling
I didn't write for a couple of days and once again my excuse is the same... way too much pain and misery to deal with writing.
But today was different, after 2 days of bad sleep and bad dreams I got a nice complete 10-12 hours. And when I woke up though tired and heavy feeling I was pretty much OK. Then throughout most of the day I just had this overwhelming feeling from inside that I was detoxing... that I was on the rode to recovery ... that things had finally, after months of relapse, had turned a corner. The feeling faded a bunch later on but I also got a bunch of exercise today and while I was getting it there was this tiny little part of me that felt like the old me. Now I didn't do anything a tenth of what the old me would so on a regular basis and my body was very mad at me and sore after wards which didn't help me keep the feeling but it was there for a lil while. I am just trying to hold on to both feelings as much as I can and hoping that just continuing what I have been doing the last few weeks and keeping up the muscle work (what very little I am able to) will keep me moving down that "right path" and I will get back to that place I was two years ago when I was really in remission... and maybe just maybe go even farther for once. When I first got sick they said I was young and extremely healthy before getting hit so it shouldn't take more than 2-5 years to get better. Well we are getting to 5 years now, and my relapses haven't helped anything but I am hoping that today is a sign that I can do it and not too far off schedule either.
Here's praying and hoping I can keep the happy thoughts (something I am not always very good at :)
TTY'allL
But today was different, after 2 days of bad sleep and bad dreams I got a nice complete 10-12 hours. And when I woke up though tired and heavy feeling I was pretty much OK. Then throughout most of the day I just had this overwhelming feeling from inside that I was detoxing... that I was on the rode to recovery ... that things had finally, after months of relapse, had turned a corner. The feeling faded a bunch later on but I also got a bunch of exercise today and while I was getting it there was this tiny little part of me that felt like the old me. Now I didn't do anything a tenth of what the old me would so on a regular basis and my body was very mad at me and sore after wards which didn't help me keep the feeling but it was there for a lil while. I am just trying to hold on to both feelings as much as I can and hoping that just continuing what I have been doing the last few weeks and keeping up the muscle work (what very little I am able to) will keep me moving down that "right path" and I will get back to that place I was two years ago when I was really in remission... and maybe just maybe go even farther for once. When I first got sick they said I was young and extremely healthy before getting hit so it shouldn't take more than 2-5 years to get better. Well we are getting to 5 years now, and my relapses haven't helped anything but I am hoping that today is a sign that I can do it and not too far off schedule either.
Here's praying and hoping I can keep the happy thoughts (something I am not always very good at :)
TTY'allL
Wednesday, September 22, 2010
days go by
I was sick over the weekend and then better Sunday and sick on Monday and Tuesday again this time it was all slime and my sinuses (not fun and I won't get icky with the details). Suffice to say I was miserable. Monday I slept for 15 hours and it all started when I finally woke up. Getting past it all has been yucky and to be honest it isn't quite over yet.
And the pain has gone up, and my tolerance has gone down as the yuckiness drags on even if it gets better day by day.
I have been sleeping almost normal diurnal hours lately, up in the morning and down in the evening; but I am not getting my nice calm and focused group of hours in which I was getting so much done in the past. I am not getting much of anything done, physical or mental and that is frustrating the hell out of me.
So that has been my week so far. You are now undated :)
TTY'allL
And the pain has gone up, and my tolerance has gone down as the yuckiness drags on even if it gets better day by day.
I have been sleeping almost normal diurnal hours lately, up in the morning and down in the evening; but I am not getting my nice calm and focused group of hours in which I was getting so much done in the past. I am not getting much of anything done, physical or mental and that is frustrating the hell out of me.
So that has been my week so far. You are now undated :)
TTY'allL
lessons learned
Hello and welcome to another day in the life of a CFIDS patient :)
So Saturday I was sick and it was my cousin's wedding, UGH! I had a sore throat and maybe even a short Epstein Bar flare up (yucky mono gook on my right tonsil). I hate being sick even when I don't have anything to do. It tends to make all aspects of my condition worse and since I get sick to my stomach anytime I get ill it means I can't take any of my normal pills.
I missed the actual ceremony but I did make the reception since it was hours later. But the reception was at the Thayer Hotel at West Point and going through the military check point and dealing with problems stemming from my wheelchair and the fact that many of the guests were Army personnel in dress uniform it was really hard on my emotionally. The whole you lost your dream and you will never serve your country thing was like a knife I couldn't pull out of my chest. And on top of all that I was dealing with agonizing neuro pain triggered by me being sick and under stress and no matter what I took it didn't want to go away.
I also learned for the first time what people mean when they say that the disabled are treated differently. I had heard people say that but never understood. To me someone in a wheelchair was just someone sitting down, someone missing a limb was someone who had suffered but had some kind of adventure of some sort. I also grew up with a lot of older members of my family and I saw a bunch of them end up in wheelchairs but they were amazing and strong and passionate vibrant people so I never thought about it. But at that wedding I learned I was an exception. People don't want to look at you. They can't seem to keep a conversation or they continuously just say uh huh, or yeah OK. It made trying to make a hard and uncomfortable situation even harder and more uncomfortable.
So Saturday I was sick and it was my cousin's wedding, UGH! I had a sore throat and maybe even a short Epstein Bar flare up (yucky mono gook on my right tonsil). I hate being sick even when I don't have anything to do. It tends to make all aspects of my condition worse and since I get sick to my stomach anytime I get ill it means I can't take any of my normal pills.
I missed the actual ceremony but I did make the reception since it was hours later. But the reception was at the Thayer Hotel at West Point and going through the military check point and dealing with problems stemming from my wheelchair and the fact that many of the guests were Army personnel in dress uniform it was really hard on my emotionally. The whole you lost your dream and you will never serve your country thing was like a knife I couldn't pull out of my chest. And on top of all that I was dealing with agonizing neuro pain triggered by me being sick and under stress and no matter what I took it didn't want to go away.
I also learned for the first time what people mean when they say that the disabled are treated differently. I had heard people say that but never understood. To me someone in a wheelchair was just someone sitting down, someone missing a limb was someone who had suffered but had some kind of adventure of some sort. I also grew up with a lot of older members of my family and I saw a bunch of them end up in wheelchairs but they were amazing and strong and passionate vibrant people so I never thought about it. But at that wedding I learned I was an exception. People don't want to look at you. They can't seem to keep a conversation or they continuously just say uh huh, or yeah OK. It made trying to make a hard and uncomfortable situation even harder and more uncomfortable.
Friday, September 17, 2010
??
So once again today, I am tired and feel kinda like a lazy lump. But the pain isn't bad at all so I have decided to write about something a lil different then my disorder itself today.
Today I am writing about things that make me think.
The two things on TV or in conversation, that make me the most distracted, pain free, or actually happy are Star Trek (everything but DS9 and the new movie) and General Hospital. I can't even figure out why. I have always loved Trek and the anthropology and exploration and tolerance it is supposed to be about, but I can't quite figure out why talking about it or watching it makes me so happy and just snaps me out of everything these days (if only for a minute). Its a huh? thought that came to me today.
Also GH? I mean it drives me nuts with half the characters psychopaths and dirty rotten liers and everyone sleeping with each other and marrying each others exes and siblings and stuff, but at the same time it takes me out of my crap and, unless something so horrible I scream at the scene and TV or get enraged at the injustice of it happens, it distracts me from my pain completely. And I love posting on the message board and having something in common and some connection with other people. It is like I'm not trapped (by my own body or neurosis) in the apartment, like I have a real outside self too.
This is just weird I mean they are two so different shows and neither is reality, so why do they make me feel better? And I know that research has shown that TV and VR can work for people with chronic pain as a distraction and help in coping, but I am 10X's as addicted to my DVR then I am to my pain meds, and that is strange and somewhat upsetting. I worry my addiction to the TV is making me even more lazy and tired then the disease itself, but there is no actual way to know.
Too many questions for me... TTY'all L
Today I am writing about things that make me think.
The two things on TV or in conversation, that make me the most distracted, pain free, or actually happy are Star Trek (everything but DS9 and the new movie) and General Hospital. I can't even figure out why. I have always loved Trek and the anthropology and exploration and tolerance it is supposed to be about, but I can't quite figure out why talking about it or watching it makes me so happy and just snaps me out of everything these days (if only for a minute). Its a huh? thought that came to me today.
Also GH? I mean it drives me nuts with half the characters psychopaths and dirty rotten liers and everyone sleeping with each other and marrying each others exes and siblings and stuff, but at the same time it takes me out of my crap and, unless something so horrible I scream at the scene and TV or get enraged at the injustice of it happens, it distracts me from my pain completely. And I love posting on the message board and having something in common and some connection with other people. It is like I'm not trapped (by my own body or neurosis) in the apartment, like I have a real outside self too.
This is just weird I mean they are two so different shows and neither is reality, so why do they make me feel better? And I know that research has shown that TV and VR can work for people with chronic pain as a distraction and help in coping, but I am 10X's as addicted to my DVR then I am to my pain meds, and that is strange and somewhat upsetting. I worry my addiction to the TV is making me even more lazy and tired then the disease itself, but there is no actual way to know.
Too many questions for me... TTY'all L
Thursday, September 16, 2010
10% aint perfect but its nice
The title of today's post is because the unending pain finally stopped! Yay Balloons and streamers and getting things done... well actually no to all of the above. Yes the pain stopped being unending, yes the pain was 10% of yesterdays pain for most of the day, but no I wasn't getting anything done. The pain finally got to a level where I could distract myself and spend the day relatively comfortably just relaxing so that's what I did.
Then out of no where in the mid evening everything went kinda haywire and my brain felt like it was being squeezed and the repetitive pain that hits my upper left thigh (like someone is digging around in the muscle with a large mean needle) and after that just migrating crazy shots of pain for hours. Then I tried to help my mom and Frank clean and move some stuff in the apartment and did something to my knee. Is is real or is it nuero? I just don't know but the damn thing hurts a lot so why take any chances, back to the bed with me :(
Now I'm having weird muscle pain on a whole side of my body, then it switches to the other side, and then back again... new sensations YAY!! (that was sarcasm just so you know)
And now I am trying to help my mom get ready for her class tomorrow, so tty'all later!
Oh P.S. I really good friend of mine, Jonathan Wilder, was in a car crash on his way to see his mom before deploying for Iraq. He is out of ICU but I am worried so if you pray for those in need of healing and/or the hand of G*d, please remember his name. Thank you!
Then out of no where in the mid evening everything went kinda haywire and my brain felt like it was being squeezed and the repetitive pain that hits my upper left thigh (like someone is digging around in the muscle with a large mean needle) and after that just migrating crazy shots of pain for hours. Then I tried to help my mom and Frank clean and move some stuff in the apartment and did something to my knee. Is is real or is it nuero? I just don't know but the damn thing hurts a lot so why take any chances, back to the bed with me :(
Now I'm having weird muscle pain on a whole side of my body, then it switches to the other side, and then back again... new sensations YAY!! (that was sarcasm just so you know)
And now I am trying to help my mom get ready for her class tomorrow, so tty'all later!
Oh P.S. I really good friend of mine, Jonathan Wilder, was in a car crash on his way to see his mom before deploying for Iraq. He is out of ICU but I am worried so if you pray for those in need of healing and/or the hand of G*d, please remember his name. Thank you!
Wednesday, September 15, 2010
Hello
OK I have decided I have to keep up with this better because I just realized (literally just a couple minutes ago) that I post more on the Facebook wall for General Hospital then I do here and that is pretty sad LOL
SO for the last 3 days the pain has been moderate to mild (should be happy right?), but the catch it is that the pain has also been practically un-ending. The pain killers and muscle relaxants and narcotics (prescribed to me of course) have been dulling or cutting the edge but for some new and unknown reason it isn't making it go away like it is supposed to and had been for weeks. I just need a break, you know an hour or a couple hours where if I stop watching TV or think about my body I am not bombarded by my nerves screaming at me (or sometimes just grumbling quite forcefully). I swear the nonstop is driving me insane.
I actually think it has been building for a while and this is why I have been feeling so drained the last couple of day. And since I don't notice the pain while asleep build of pain and drain on my system is likely why have been so enraged and depressed that I have been woken constantly during the mornings this week.
And there you have me for today: in pain, drained, going insane, and since I can't go to a hospital for help I spend my afternoons watching a soap opera about one instead ;)
SO for the last 3 days the pain has been moderate to mild (should be happy right?), but the catch it is that the pain has also been practically un-ending. The pain killers and muscle relaxants and narcotics (prescribed to me of course) have been dulling or cutting the edge but for some new and unknown reason it isn't making it go away like it is supposed to and had been for weeks. I just need a break, you know an hour or a couple hours where if I stop watching TV or think about my body I am not bombarded by my nerves screaming at me (or sometimes just grumbling quite forcefully). I swear the nonstop is driving me insane.
I actually think it has been building for a while and this is why I have been feeling so drained the last couple of day. And since I don't notice the pain while asleep build of pain and drain on my system is likely why have been so enraged and depressed that I have been woken constantly during the mornings this week.
And there you have me for today: in pain, drained, going insane, and since I can't go to a hospital for help I spend my afternoons watching a soap opera about one instead ;)
Tuesday, September 14, 2010
Fell off the edge of the world again, Sorry
Ok so my last post was pretty grim, but that was where I was.
Now I am doing a bit better over all, still get my dark days or minutes or hours, but I am also finally having some good times. I have minutes, sometimes hours, once even a whole day where I feel stable and ok even get some stuff done.
I have recently learned that I don't have depression but I do have a moderate form of emotional lability, so I can be completely depressed out of control with grief and rage and almost suicidal for hours and then it passes and I can be calm and centered and as focused and relaxed as an ancient Buddhist monk. It is kinda creepy to say the least and there are no medications that can fix it (like anti-depressants), and depending on how close to a pathological condition your version of it is there may be absolutely nothing you can do about it at all. We are hoping that with meditation and bio-feedback and stress coping strategies I can control it and maybe even make it go away and heal a lot of neurological damage of my condition. Not that any of that is easy but it is a plan and that is a very good start, and just knowing all this tends to help me stay a lil more grounded and stable.
SO that is what is new and going on with me.
I will try to keep up with the Blog better now that I am getting a better hold on everything :)
TTY'all L
Now I am doing a bit better over all, still get my dark days or minutes or hours, but I am also finally having some good times. I have minutes, sometimes hours, once even a whole day where I feel stable and ok even get some stuff done.
I have recently learned that I don't have depression but I do have a moderate form of emotional lability, so I can be completely depressed out of control with grief and rage and almost suicidal for hours and then it passes and I can be calm and centered and as focused and relaxed as an ancient Buddhist monk. It is kinda creepy to say the least and there are no medications that can fix it (like anti-depressants), and depending on how close to a pathological condition your version of it is there may be absolutely nothing you can do about it at all. We are hoping that with meditation and bio-feedback and stress coping strategies I can control it and maybe even make it go away and heal a lot of neurological damage of my condition. Not that any of that is easy but it is a plan and that is a very good start, and just knowing all this tends to help me stay a lil more grounded and stable.
SO that is what is new and going on with me.
I will try to keep up with the Blog better now that I am getting a better hold on everything :)
TTY'all L
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