A lot of people with an invisiable chronic illness (ICI) hate the phrase "but you don't look sick" or "you look great though" or "its hard to believe you look fine"
None of the above make any of us feel any better... at one point I was so frustrated I wanted to shave my head and tell people I had cancer just so they would leave me alone and believe me that I am extremely ill and disabled.
But today I am realizing that there is more to it than just being frustrated that people don't believe us, or at least me. I may not look nearly as sick or disabled as I am but at the same time I don't look almost anything like I did when healthy or even what I look like when in remission.
I am quite paler then I was most of my life or how tan I make sure I get when healthier. I have always hated being pale (only thing that stopped me going goth considering how much I love vampires lol :) I have pictures of me as a child at my family beach house looking darker than some of my cousins who are actually African American. I always find darker skin to be more beautiful and healthy. (Well unless you come from a culture that is truly born to be pale like the lovely red heads of Ireland or the Scandinavian Vikings, then you look pretty damn good pale at least in my opinion)
I have spent my life living in the sun and when I got older and my time for playing in the sun was restricted by work or study I would tan in UV beds... I actually tend to feel healthier too when I got a UV tan if I hadn't been able to be in the sun for weeks or months. I don't know if it was a needed boost of vitamin D or just the fire spirit inside me getting renewed by the heat (that is an image I used to get in my mind while relaxing/resting in the beds).
I also hate my weakness, it isn't overly obvious how damaged I have become while sick on the outside but I was muscular and fit (I could squat 250lbs and bench press 160 while weighing only 110, now I am lucky when I can lift all my groceries or a gallon of water). Its true you can't see the damage to my muscles but you can see the 20lbs I have gained of fat (and since muscle weighs more than fat that is a lot of chub). My legs have almost no definition to the calves anymore, my thighs rub together and I have had to buy new sets of jeans at least twice and can't come close to fitting into almost anything I loved to wear when healthy. My breast were only a B cup but with pectoral muscles as strong as mine were they almost seemed fake they were so high and firm and perky :) but now I am heavy starting to sag D and I honestly miss the perky lil boobs I had. I had a six pack for years. Even when it wasn't totally defined it was always flat. I may have been prideful but my body was powerful it was strong and had been used more than once to defend itself from attack. It was attractive and that gives a woman a sense of power all its own.
So now I don't get the understanding I deserve for being sick and disabled... I get yelled at or dirty looks when I use MY handicap pass, or wheel around in my wheel chair till I feel alright to stand and then walk because my circulation needs the leg movement so badly (but if I can walk I don't need the chair I must be faking it right?) And then on the other end I am stuck with weakness and vulnerability I am both unused to and most days unable to stand (I have always been able to protect myself to be defenseless is terrifying and I never dealt well with fear) and I feel unattractive and my pride is crumpled.
Why do I have to get kicked when I am down especially when almost no one is willing to admit or able to understand that I am down?
Friday, October 8, 2010
Wednesday, September 29, 2010
New Docs and a Joke
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
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
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
Wednesday, August 25, 2010
been a while
Ok so I know I am not good at keeping up with this thing, but when you are really sick and really miserable it is hard to keep up with anything so even though this is supposed to be about my life dealing with this illness, when the illness is at its worst I prob won't be keeping up well.
So I left Texas and moved back to NYC. The trip itself almost killed me (puking at least 3-5 times a day, no hunger, no thirst, sick every time I drank anything, unending pain, and depression, trouble even walking or standing) I got back to NYC and the symptoms continued and my back and neck were so bad I couldn't sleep some nights.
I spent at least 2 nights tossing and turning spasmodically all night I was afraid I was having seizures.
I finally got a couple OK afternoons/evenings and saw a movie with a good friend and then again with my dad and mom for my dad's birthday.
Then I crashed again. It has been two weeks or more and I still haven't been able to see a chiropractor, I am miserable and sleeping all day for the last two days and can't seem to do much of anything during the few hours when I am up.
The new apartment looks great and does have more room technically but there is a prob with the AC in the loft and since I have been too sick when I am awake or mom is asleep on the floor right by me I haven't been able to do any cleaning or oganizing and mom is working full time and over time since the day we got back the apartment is crowded and a mess.
I was supposed to come back so that I could get better and mom could take care of me, but she is working and I am a strain and I am not getting any better (maybe, likely worse) and I feel like a burden and an unhelpful lazy lump.
I am just to tired and depressed and the pain doesn't seem to stop... I hate this so much
I used to have a full and pretty good, on the way to being a totally fulfilling, life. Now I don't have so much a life but an existance and not a very fun or fulfilling one in any way.
So I left Texas and moved back to NYC. The trip itself almost killed me (puking at least 3-5 times a day, no hunger, no thirst, sick every time I drank anything, unending pain, and depression, trouble even walking or standing) I got back to NYC and the symptoms continued and my back and neck were so bad I couldn't sleep some nights.
I spent at least 2 nights tossing and turning spasmodically all night I was afraid I was having seizures.
I finally got a couple OK afternoons/evenings and saw a movie with a good friend and then again with my dad and mom for my dad's birthday.
Then I crashed again. It has been two weeks or more and I still haven't been able to see a chiropractor, I am miserable and sleeping all day for the last two days and can't seem to do much of anything during the few hours when I am up.
The new apartment looks great and does have more room technically but there is a prob with the AC in the loft and since I have been too sick when I am awake or mom is asleep on the floor right by me I haven't been able to do any cleaning or oganizing and mom is working full time and over time since the day we got back the apartment is crowded and a mess.
I was supposed to come back so that I could get better and mom could take care of me, but she is working and I am a strain and I am not getting any better (maybe, likely worse) and I feel like a burden and an unhelpful lazy lump.
I am just to tired and depressed and the pain doesn't seem to stop... I hate this so much
I used to have a full and pretty good, on the way to being a totally fulfilling, life. Now I don't have so much a life but an existance and not a very fun or fulfilling one in any way.
Sunday, August 1, 2010
Question
OK this post has two different purposes:
1. I want some advice (see rest of post :)
2. I want to see who is actually reading this thing after all the depressing posts and rants, I was told people wanted to hear what was going on with me no matter how sad or broken I am, but I have heard from family I may be too depressing and that my title was dark. SO let me hear from you the reader.
As you should all know by now, either from my first post or my profile, I can not fulfill my dream of becoming a Marine and for the time being it isn't likely I will be able to work for the government in much of any capacity; so I am looking for ideas from people who know me of things they always thought I should do... and ideas based on some basic parameters listed below, the first kind don't have to relate to the latter :)
Things I would like to have in a job:
include travel (just about anywhere but preferably South Asia, Europe, Middle East)
language skills
people skills (make them feel comfortable, happy)
carry a gun, concealed or otherwise
Please leave comments here or e-mail me at Jessissickandtired@gmail.com
Thanks for the help, and thanks for reading... if you are reading cause you are sick as well I hope anything I write helps if in only that you don't feel alone :)
1. I want some advice (see rest of post :)
2. I want to see who is actually reading this thing after all the depressing posts and rants, I was told people wanted to hear what was going on with me no matter how sad or broken I am, but I have heard from family I may be too depressing and that my title was dark. SO let me hear from you the reader.
As you should all know by now, either from my first post or my profile, I can not fulfill my dream of becoming a Marine and for the time being it isn't likely I will be able to work for the government in much of any capacity; so I am looking for ideas from people who know me of things they always thought I should do... and ideas based on some basic parameters listed below, the first kind don't have to relate to the latter :)
Things I would like to have in a job:
include travel (just about anywhere but preferably South Asia, Europe, Middle East)
language skills
people skills (make them feel comfortable, happy)
carry a gun, concealed or otherwise
Please leave comments here or e-mail me at Jessissickandtired@gmail.com
Thanks for the help, and thanks for reading... if you are reading cause you are sick as well I hope anything I write helps if in only that you don't feel alone :)
Wednesday, July 28, 2010
Roller Coasters suck
The title of this post is based on the Roller Coaster of emotions caused by illness and pain and depression:
SO I am sick and life sucks all around. OK I don't like it and wish I was better but that's where I am. Then the pain gets better or the fatigue or both and I start exercising or I get to go out dancing or to the movies with friends or dinner with a nice guy or all of the above and life isn't perfect or the way it used to be, but it is a lot better. Then something happens, chemical upset in the brain, a giant pain spike, a 24 hour night of sleep or longer... and then I am depressed and even though the pain isn't too bad (but continuing) you can't get up you can't get anything done and more than the fact that you have hit this low is the that you were doing so "well" when it happened.
Or it happens from another side of the "pain, fatigue, depression" triangle. Either way I go up on one or two sides and then slide down the other side or two and feel stuck in a pit I can't remember how to get out of... especially when it is the emotional side of the triangle because it is the hardest on the rest of the system. I can deal with the pain generally if I am not awfully tired or depressed. I can handle being tired if I am not depressed or in much pain. But when I get depressed, even if the other symptoms are or were doing ok, I crash. The depression makes me more tired no matter where I was before, it gives me more pain and even when the pain isn't too bad it makes it overwhelming because the depression overwhelms all the rest of me.
I know I have gotten over these mini relapses, even when I am in an overall relapse. But I can't remember how, or what I did different to cause it or fix it.
It leaves me more depressed because I can't see a way out of it.
I'm gonna try exercise and good food and keeping up with my regimen but it gets so hard when I feel like this. Last night I tried to exercise but couldn't get past a couple movements, it made me feel like I was gonna pass out.
UGH!!! all I have to say is UGH!!!
SO I am sick and life sucks all around. OK I don't like it and wish I was better but that's where I am. Then the pain gets better or the fatigue or both and I start exercising or I get to go out dancing or to the movies with friends or dinner with a nice guy or all of the above and life isn't perfect or the way it used to be, but it is a lot better. Then something happens, chemical upset in the brain, a giant pain spike, a 24 hour night of sleep or longer... and then I am depressed and even though the pain isn't too bad (but continuing) you can't get up you can't get anything done and more than the fact that you have hit this low is the that you were doing so "well" when it happened.
Or it happens from another side of the "pain, fatigue, depression" triangle. Either way I go up on one or two sides and then slide down the other side or two and feel stuck in a pit I can't remember how to get out of... especially when it is the emotional side of the triangle because it is the hardest on the rest of the system. I can deal with the pain generally if I am not awfully tired or depressed. I can handle being tired if I am not depressed or in much pain. But when I get depressed, even if the other symptoms are or were doing ok, I crash. The depression makes me more tired no matter where I was before, it gives me more pain and even when the pain isn't too bad it makes it overwhelming because the depression overwhelms all the rest of me.
I know I have gotten over these mini relapses, even when I am in an overall relapse. But I can't remember how, or what I did different to cause it or fix it.
It leaves me more depressed because I can't see a way out of it.
I'm gonna try exercise and good food and keeping up with my regimen but it gets so hard when I feel like this. Last night I tried to exercise but couldn't get past a couple movements, it made me feel like I was gonna pass out.
UGH!!! all I have to say is UGH!!!
Saturday, July 24, 2010
times 3
So I get Fibro pain on and off, I get Neuralgic pain a lot, and now today I have muscle pain from yesterday's attempt at exercise (which caused plenty of issues of its own).
I tried to go for a jog at one point and made it a very very short distance before my energy and lungs gave out. Now I have been very inactive of late, and the heat and humidity of central Texas is legendary in its ability to debilitate people, but beyond all that I now know after many tests that there is a congenital problem with my lungs. I don't process CO2 correctly and because of that my lungs don't always get enough oxygen to my brain, which is why I have always been a crappy runner. I have a relatively high amount of carbonic acid or something in my blood which tells the doctors that I have had the CO2 issue for most of my life and was somewhat dealing with it. Since I have become so sick and the POTS has caused other issues with my blood getting enough oxygen to my brain my lungs don't seem to work well at all... I have almost no endurance or ability to run or do much of any aerobic exercise. Unfortunately that leaves me realizing whatever I finally get to do with my life it will most likely be a desk job. I never wanted a desk job and am having a lot of trouble accepting the staid path my life is seeming to heading down.
To all those who have lost their dreams or plans for their lives the pain doesn't ever truly dissipate but it does become bearable, at least most of the time. Find a way to bring whatever it was about your dreams and plans that made you happy into your new life... it is really hard I know but I do believe it is possible (at least most of the time :)
I tried to go for a jog at one point and made it a very very short distance before my energy and lungs gave out. Now I have been very inactive of late, and the heat and humidity of central Texas is legendary in its ability to debilitate people, but beyond all that I now know after many tests that there is a congenital problem with my lungs. I don't process CO2 correctly and because of that my lungs don't always get enough oxygen to my brain, which is why I have always been a crappy runner. I have a relatively high amount of carbonic acid or something in my blood which tells the doctors that I have had the CO2 issue for most of my life and was somewhat dealing with it. Since I have become so sick and the POTS has caused other issues with my blood getting enough oxygen to my brain my lungs don't seem to work well at all... I have almost no endurance or ability to run or do much of any aerobic exercise. Unfortunately that leaves me realizing whatever I finally get to do with my life it will most likely be a desk job. I never wanted a desk job and am having a lot of trouble accepting the staid path my life is seeming to heading down.
To all those who have lost their dreams or plans for their lives the pain doesn't ever truly dissipate but it does become bearable, at least most of the time. Find a way to bring whatever it was about your dreams and plans that made you happy into your new life... it is really hard I know but I do believe it is possible (at least most of the time :)
Monday, July 19, 2010
random rant
I don't think I will be able to watch History channel, or History International anymore and I am starting to think that most museums and History and Archeology departments that associate themselves with either channel at anytime should be blown up!
These channels and their shows mention ideas or theories of what things, from civilizations that have been gone for thousands of years and left NO WRITTEN history, might have meant and then repeat their theories over and over as fact...
I would kill for a time machine right now to bring back an Orkney Pagan or a Henge builder and watch them beat the crap out of the EXPERTS (they keep using that word over and over again) for desecrating their religious sites with blasphemous ideas... These people have no clue what the hell they are talking about...
many times they are interpreting from "clues" that don't even exist anymore... or have no actual proof of what the clues that do exist actually mean:
Oh my look there is a cow skull at an embankment that took decades to make so this is obviously a religious point for death ceremonies long before the henge was built except that about 15 min earlier we, the "experts", told you that all henges were built with embankments that were dug first and since this is the largest ever made and took decades it couldn't possibly just be that there were some religious cereomonies done while digging or that they consecrated it in certain ways and not that is was a religious site before hand instead of it being dedicated to death in every way
I am enraged by the way this show was directed produced and narrated and the "experts" that were used and spoke their theories as facts and known facts that are practically irrefutable they don't deserve to be acknowledged as historians at all ever again.
This is at least the tenth time I have been frustrated or pissed off by these channels and the way they show historical events people or places. Only a couple weeks ago I was enraged by a show denigrating Alexander the Great and I have seen at least three shows about Cleopatra that were filled with twaddle and modern psycho babble that had nothing to do with actual fact, culture, or history... Now the Pagans of the British Isles.
Learning is disappearing and I for one am made quite sad by it.
These channels and their shows mention ideas or theories of what things, from civilizations that have been gone for thousands of years and left NO WRITTEN history, might have meant and then repeat their theories over and over as fact...
I would kill for a time machine right now to bring back an Orkney Pagan or a Henge builder and watch them beat the crap out of the EXPERTS (they keep using that word over and over again) for desecrating their religious sites with blasphemous ideas... These people have no clue what the hell they are talking about...
many times they are interpreting from "clues" that don't even exist anymore... or have no actual proof of what the clues that do exist actually mean:
Oh my look there is a cow skull at an embankment that took decades to make so this is obviously a religious point for death ceremonies long before the henge was built except that about 15 min earlier we, the "experts", told you that all henges were built with embankments that were dug first and since this is the largest ever made and took decades it couldn't possibly just be that there were some religious cereomonies done while digging or that they consecrated it in certain ways and not that is was a religious site before hand instead of it being dedicated to death in every way
I am enraged by the way this show was directed produced and narrated and the "experts" that were used and spoke their theories as facts and known facts that are practically irrefutable they don't deserve to be acknowledged as historians at all ever again.
This is at least the tenth time I have been frustrated or pissed off by these channels and the way they show historical events people or places. Only a couple weeks ago I was enraged by a show denigrating Alexander the Great and I have seen at least three shows about Cleopatra that were filled with twaddle and modern psycho babble that had nothing to do with actual fact, culture, or history... Now the Pagans of the British Isles.
Learning is disappearing and I for one am made quite sad by it.
Sunday, July 18, 2010
What the bleep is wrong with me... the game
Ok I think I should keep this to myself and make money off it LOL
But mom says to share this small piece of funny brightness with all you who read my blog...
So tonight/ early morning I have a raging headache which has been pounding at me on and off all day no matter how much Advil I take; after a frustrating night I feel I wasted much to much energy and money on an endeavor that bore no fruit and pissed me off.
So I called mom when I got home as she expected I and let her know of the headache. She had me take my blood pressure, which was a bit high, and then we checked a couple other things and I had an amazing idea. We should make a spinning wheel like on wheel of fortune and instead of prizes put on it all the different parts of my condition (i.e. blood pressure, pulmonary issues, neuralgia, fibromyalgia, and so on and so forth) so that when I am miserable or sick or have a pounding headache I can spin the Wheel of what the bleep is wrong with me and just choose a cause to my misery since there are too many variables to actually know what the cause really is.
I hope it has made you all laugh as it did my mother and I... and I hope that none of you steal it as an idea of a toy to make sick people like me laugh ... I could make a fortune :)
But mom says to share this small piece of funny brightness with all you who read my blog...
So tonight/ early morning I have a raging headache which has been pounding at me on and off all day no matter how much Advil I take; after a frustrating night I feel I wasted much to much energy and money on an endeavor that bore no fruit and pissed me off.
So I called mom when I got home as she expected I and let her know of the headache. She had me take my blood pressure, which was a bit high, and then we checked a couple other things and I had an amazing idea. We should make a spinning wheel like on wheel of fortune and instead of prizes put on it all the different parts of my condition (i.e. blood pressure, pulmonary issues, neuralgia, fibromyalgia, and so on and so forth) so that when I am miserable or sick or have a pounding headache I can spin the Wheel of what the bleep is wrong with me and just choose a cause to my misery since there are too many variables to actually know what the cause really is.
I hope it has made you all laugh as it did my mother and I... and I hope that none of you steal it as an idea of a toy to make sick people like me laugh ... I could make a fortune :)
Thursday, July 15, 2010
catching up a lil
Hi all...
If there are any of you out there :)
I haven't been writing mostly cause the very few days when I haven't been sick or miserable I have been using the energy or painkiller help to get out of this pit of an apt and do something like loose the local Bikini Contest again (though this time I was second out of 8 instead of third out of 5 LOL... but to be honest I was only second on a technicality the actual second was flashing to get her applause)
I also made it to a nice dinner with a friend and met a gorgeous waiter and then saw the one movie I have been waiting months and months for... Despicable Me and it was GREAT!! o:)
So other than those few days out my sleep schedule has been totally messed up with me going to bed around 5am or later and having problem waking up before 8pm... then I spend the hours I am up tired, worn out, alone, sick and or in pain but over all miserable.
The depression is coming out of the darkness again and again these last few weeks but mostly this last 7 days or so... I feel like I don't have anything to be proud of or feel comfortable in anymore:
I used to be a reasonable wrestler (with many nice, and much better than I was, friends telling me I was very good at least at technique); I was pretty damn great at history or at least my areas of interest and could do amazing things in a debate; I was great at picking up and even retaining languages; I was reasonably attractive and didn't have too much trouble getting a date (and that even with the guys I chose and liked); I was a good dancer in Latin, Ballroom, Club; and I was an OK actress and pretty good on stage or performing in varied ways. These days between muscle loss and weakness, lack of energy and overwhelming fatigue both of which have caused my endurance to become non existent for athletics or dance or even walking sometimes, brain damage and memory loss have helped to disintegrate my abilities at history debate and languages, all of these together have messed my performing abilities in just about all ways, and as pathetic as it sounds I haven't been asked out on a date by single guy I like (at least here in Texas for two years or more)
It is hard feeling that I don't have something, anything, left that I am good at or can beleieve in and feel comfortable with saying this is what I can do... this I have left to me. And it comes out punches me in the face when I am feeling really bad health-wise cause I can't go and hide in one of those things, I was a published poet on multiple occations and I have only written one poem in 4 years. The last one before that I wrote for my ex-fiance right before I started getting really sick. It is almost as if the disease not only sucked up my strength and health but also my intellect and talents of all kinds leaving nothing behind but pain and neurosis and depression.
On that happy note, until next time ... and I will try to keep up better
If there are any of you out there :)
I haven't been writing mostly cause the very few days when I haven't been sick or miserable I have been using the energy or painkiller help to get out of this pit of an apt and do something like loose the local Bikini Contest again (though this time I was second out of 8 instead of third out of 5 LOL... but to be honest I was only second on a technicality the actual second was flashing to get her applause)
I also made it to a nice dinner with a friend and met a gorgeous waiter and then saw the one movie I have been waiting months and months for... Despicable Me and it was GREAT!! o:)
So other than those few days out my sleep schedule has been totally messed up with me going to bed around 5am or later and having problem waking up before 8pm... then I spend the hours I am up tired, worn out, alone, sick and or in pain but over all miserable.
The depression is coming out of the darkness again and again these last few weeks but mostly this last 7 days or so... I feel like I don't have anything to be proud of or feel comfortable in anymore:
I used to be a reasonable wrestler (with many nice, and much better than I was, friends telling me I was very good at least at technique); I was pretty damn great at history or at least my areas of interest and could do amazing things in a debate; I was great at picking up and even retaining languages; I was reasonably attractive and didn't have too much trouble getting a date (and that even with the guys I chose and liked); I was a good dancer in Latin, Ballroom, Club; and I was an OK actress and pretty good on stage or performing in varied ways. These days between muscle loss and weakness, lack of energy and overwhelming fatigue both of which have caused my endurance to become non existent for athletics or dance or even walking sometimes, brain damage and memory loss have helped to disintegrate my abilities at history debate and languages, all of these together have messed my performing abilities in just about all ways, and as pathetic as it sounds I haven't been asked out on a date by single guy I like (at least here in Texas for two years or more)
It is hard feeling that I don't have something, anything, left that I am good at or can beleieve in and feel comfortable with saying this is what I can do... this I have left to me. And it comes out punches me in the face when I am feeling really bad health-wise cause I can't go and hide in one of those things, I was a published poet on multiple occations and I have only written one poem in 4 years. The last one before that I wrote for my ex-fiance right before I started getting really sick. It is almost as if the disease not only sucked up my strength and health but also my intellect and talents of all kinds leaving nothing behind but pain and neurosis and depression.
On that happy note, until next time ... and I will try to keep up better
Sunday, July 4, 2010
my legs are going to hate me
Hi all and happy 4th of July!!
Today wasn't too bad a day to begin with. Not too much pain or dizziness and only a lil depression on and off, at least that was most of the day. In the evening I was missing NY traditions for 4th of July and my family and so I decided to try and find some fireworks.
First I found out that the Bush (41) Presidential Library does something every year but that it changes and sometimes the former President comes. So I decided to check the website and the events page for the 4th of July had been hacked by some *sshole. It was all messed up and said "this page has been hacked by "so and so" (the jerk does not deserve recognition by me!) the bla bla Saudi something or other and they has a whole bunch of stuff in Arabic. I was so angry I was crying... you want to hack the Presidential Library to prove something whatever, hack the history of wine exhibit or the back to school events NOT THE BIRTHDAY OF MY COUNTRY!!!
Next mom got me under control and convinced me to go check it out even without any foreknowledge of what was going on so I threw on some blue jeans and a red tank top and did some pretty sparkly make up (blue and white eyes and red lips) and got out the door and on the road.
On my way to there I found out that half the road was blocked and everyone was supposed to park at Reed Arena or the West Campus Garage and walk or take a shuttle to the Fireworks. So pulling in I start to get anxious and worried about having to be reliant on the shuttles and such. But mom convinced me to try it so I get out in the 90's degree weather and 98% humidity and head to the shuttle.
I get to the Library and there are people everywhere and lots of lil kids with glowy things and I start walking around checking it all out. There was a full band/orchestra playing patriotic music and some lights on in the parking lot. I walked around and sent some texts and didn't see anyone I knew and the food was all sold out and I was getting pretty hungry and the heat and humidity was starting to get to me so I thought maybe I should just go.
Then I saw a big hot air balloon getting blown up and I walked across the parking lot to check it out and on my way I got stared at a lot and I tried saying "howdy" and I got some strange looks and a couple "ah hi"s. I hate walking around the south alone... no one can figure out why you are alone and they all stare and you cause in a herd culture with herd mentality to be alone is to be a renegade or anarchist or something. When healthy that wouldn't really have bothered me, but now it makes me edgy and paranoid which I really hate feeling but can't seem to stop so after watching the balloon finish blowing up I decide to leave.
As I am walking towards the shuttle stop the lights all go out, and I figure that if the fireworks are going to start I might as well stay for a lil bit. But of course the fire works didn't start. We had more inspirational patriotic music and then a tribute to the armed forces. First the Army and the announcer says stand for the US Army OK. Then Anchors away starts and the announcer says stand for the Air Force so I start laughing hysterically big mistake cause now I am getting stared at more so I keep walking. Then Halls of Montezuma starts and even before I can think about it, and before the announcer has a chance to say please stand for the Marine Corps, I stop moving and am standing at attention. I start singing quietly under my breath and it is only a little nostalgic and I think I am doing OK, then some guy near by looks at me and says "are you a Marine?". That broke me. I shook my head and walked away towards the shuttles and the heat and humidity and my broken heart (figurative) broke my heart (literally). I started having trouble breathing and when I got the shuttles I wasn't feeling well but I knew I didn't want to go to the hospital so the event EMT's were not an option. The shuttles though weren't running anymore, cause the minute I got there the first fireworks burst and the shuttles weren't going to run till they were done. But no one could tell me how long they would be and I felt sick and NEEDED to get to my car.
SO I started walking... I forgot it is at least a mile back to the WCG. UGH!! (and insert your favorite curse here :)
About half way through I called my mom, I'm dying of heat and sweat, not breathing correctly and sure my heart rate is at the very least 100 if not 115; she first starts asking questions and trying to convince me the EMT's aren't going to do what I know they will do... I didn't take it well I started crying. Once I get it explained I need a distraction cause I am convinced I am going to puke or pass out or both.
But I made it I walked the whole damn thing and by the time I got there I still didn't feel so good but I lot better then when I felt like I was going to die.
I then went shopping cause I really need some stuff and 3/4 through that my blood pressure decided it wanted to make up for my tachycardia from earlier and plummeted to my shoes. So now I feel dizzy and sick (you know like I might pass out or puke or both) but it is different from your heart rate exploding you just have to know it.
At the end of the day though I am home and alive and relatively OK feeling and going to go to bed soon... but that insanely long story of crap actually constitutes one of the best or at least most active days I have had in weeks, so I guess things are looking up?
Today wasn't too bad a day to begin with. Not too much pain or dizziness and only a lil depression on and off, at least that was most of the day. In the evening I was missing NY traditions for 4th of July and my family and so I decided to try and find some fireworks.
First I found out that the Bush (41) Presidential Library does something every year but that it changes and sometimes the former President comes. So I decided to check the website and the events page for the 4th of July had been hacked by some *sshole. It was all messed up and said "this page has been hacked by "so and so" (the jerk does not deserve recognition by me!) the bla bla Saudi something or other and they has a whole bunch of stuff in Arabic. I was so angry I was crying... you want to hack the Presidential Library to prove something whatever, hack the history of wine exhibit or the back to school events NOT THE BIRTHDAY OF MY COUNTRY!!!
Next mom got me under control and convinced me to go check it out even without any foreknowledge of what was going on so I threw on some blue jeans and a red tank top and did some pretty sparkly make up (blue and white eyes and red lips) and got out the door and on the road.
On my way to there I found out that half the road was blocked and everyone was supposed to park at Reed Arena or the West Campus Garage and walk or take a shuttle to the Fireworks. So pulling in I start to get anxious and worried about having to be reliant on the shuttles and such. But mom convinced me to try it so I get out in the 90's degree weather and 98% humidity and head to the shuttle.
I get to the Library and there are people everywhere and lots of lil kids with glowy things and I start walking around checking it all out. There was a full band/orchestra playing patriotic music and some lights on in the parking lot. I walked around and sent some texts and didn't see anyone I knew and the food was all sold out and I was getting pretty hungry and the heat and humidity was starting to get to me so I thought maybe I should just go.
Then I saw a big hot air balloon getting blown up and I walked across the parking lot to check it out and on my way I got stared at a lot and I tried saying "howdy" and I got some strange looks and a couple "ah hi"s. I hate walking around the south alone... no one can figure out why you are alone and they all stare and you cause in a herd culture with herd mentality to be alone is to be a renegade or anarchist or something. When healthy that wouldn't really have bothered me, but now it makes me edgy and paranoid which I really hate feeling but can't seem to stop so after watching the balloon finish blowing up I decide to leave.
As I am walking towards the shuttle stop the lights all go out, and I figure that if the fireworks are going to start I might as well stay for a lil bit. But of course the fire works didn't start. We had more inspirational patriotic music and then a tribute to the armed forces. First the Army and the announcer says stand for the US Army OK. Then Anchors away starts and the announcer says stand for the Air Force so I start laughing hysterically big mistake cause now I am getting stared at more so I keep walking. Then Halls of Montezuma starts and even before I can think about it, and before the announcer has a chance to say please stand for the Marine Corps, I stop moving and am standing at attention. I start singing quietly under my breath and it is only a little nostalgic and I think I am doing OK, then some guy near by looks at me and says "are you a Marine?". That broke me. I shook my head and walked away towards the shuttles and the heat and humidity and my broken heart (figurative) broke my heart (literally). I started having trouble breathing and when I got the shuttles I wasn't feeling well but I knew I didn't want to go to the hospital so the event EMT's were not an option. The shuttles though weren't running anymore, cause the minute I got there the first fireworks burst and the shuttles weren't going to run till they were done. But no one could tell me how long they would be and I felt sick and NEEDED to get to my car.
SO I started walking... I forgot it is at least a mile back to the WCG. UGH!! (and insert your favorite curse here :)
About half way through I called my mom, I'm dying of heat and sweat, not breathing correctly and sure my heart rate is at the very least 100 if not 115; she first starts asking questions and trying to convince me the EMT's aren't going to do what I know they will do... I didn't take it well I started crying. Once I get it explained I need a distraction cause I am convinced I am going to puke or pass out or both.
But I made it I walked the whole damn thing and by the time I got there I still didn't feel so good but I lot better then when I felt like I was going to die.
I then went shopping cause I really need some stuff and 3/4 through that my blood pressure decided it wanted to make up for my tachycardia from earlier and plummeted to my shoes. So now I feel dizzy and sick (you know like I might pass out or puke or both) but it is different from your heart rate exploding you just have to know it.
At the end of the day though I am home and alive and relatively OK feeling and going to go to bed soon... but that insanely long story of crap actually constitutes one of the best or at least most active days I have had in weeks, so I guess things are looking up?
Saturday, July 3, 2010
Catch up
So it is has been a couple days since my last post.
They have not been good days.
They have been days filled mostly with sleep and very vivid dreams (many of them nightmares).
They have been days filled with panic attacks, anxiety, depression, and misery.
I have gotten to a point where I don't want to do anything anymore. I feel too tired and too weak and too miserable to drive, or shop, or even eat or drink unless I am hungry or thirsty and since I am nauseous so much of the time these days I don't get hungry or thirsty.
My mom is horribly worried about me, that I am not taking care of myself so she keeps asking my friends to come take care of me but I have gotten to the point where other people coming over makes me worse, it makes me drug myself to sleep just so I don't have to deal with them.
I don't want to see people pity me anymore, or them annoyed or bored by me while I sit on the couch or in bed all day doing nothing, cause I don't have the ability to do anything.
I feel awful by myself, but with other people involved I feel really worthless, I not only waste my life but now I am wasting their time and life too.
I just seem to be getting sicker and sicker. There normally are up points but not anymore that I can see. And a part of me keeps saying I should try to go out to the movies or to the club, but I am just to tired or weak to go through with any of it. I can't do it on my own and I don't want to ask anyone else to come with me because I have to cancel half the time and then I deal with being a drain on my friends.
I just feel lost and so miserable. At this point it seems easier to just sit alone and be miserable and not try. If I try I fail most of the time, so I am just done trying...
They have not been good days.
They have been days filled mostly with sleep and very vivid dreams (many of them nightmares).
They have been days filled with panic attacks, anxiety, depression, and misery.
I have gotten to a point where I don't want to do anything anymore. I feel too tired and too weak and too miserable to drive, or shop, or even eat or drink unless I am hungry or thirsty and since I am nauseous so much of the time these days I don't get hungry or thirsty.
My mom is horribly worried about me, that I am not taking care of myself so she keeps asking my friends to come take care of me but I have gotten to the point where other people coming over makes me worse, it makes me drug myself to sleep just so I don't have to deal with them.
I don't want to see people pity me anymore, or them annoyed or bored by me while I sit on the couch or in bed all day doing nothing, cause I don't have the ability to do anything.
I feel awful by myself, but with other people involved I feel really worthless, I not only waste my life but now I am wasting their time and life too.
I just seem to be getting sicker and sicker. There normally are up points but not anymore that I can see. And a part of me keeps saying I should try to go out to the movies or to the club, but I am just to tired or weak to go through with any of it. I can't do it on my own and I don't want to ask anyone else to come with me because I have to cancel half the time and then I deal with being a drain on my friends.
I just feel lost and so miserable. At this point it seems easier to just sit alone and be miserable and not try. If I try I fail most of the time, so I am just done trying...
Wednesday, June 30, 2010
Sleep: a healthy respite or a hiding place
Good morning all, it is actually 5:30 on Wed. but I am still considering it Tuesday for me.
Tuesday started out similar to the last couple of days to a week with me waking up every 2-3 hours. This time was different though in that every time I went to seep I was involved in very in depth vivid intense dreams. Three different sets of dreams though the last two had a similar theme at least.
So I slept from 6am to 2pm. I woke up so I could make it to a doctor's appointment. I got my shower and and got dressed and except for a lil chest pain I was on track and on time and proud of my self. Then I found that my keys were gone, so I went a lil nuts looking for them, and realized that my best girl who was helping me out yesterday by doing my shopping still had them in her purse. Now I was really starting to panic, but I remembered that I had 2 extra keys made and did a mad search of all the boxes that still make up my room (one of my biggest frustrations since moving in here and one of the most limiting issues in my life these days is that I don't know where anything is anymore and can never find what I need when I need it and going through the boxes is likely to seriously depress me within min anytime I deal with them). The keys were no where to be found. So I called the doctor's office and was lucky enough that there was a cancellation for tomorrow, otherwise I wouldn't have been able to see her for 2 weeks and would have be cut off from B-12 shots!
The panic attack caused me to take a half a doxy (over the counter Doxylamine is actually a sleeping pill, but it works amazingly well as anti-anxiety med) to calm down and it sort of worked but I still felt over heated and suddenly couldn't breath, it felt like the oxygen wasn't coming it (like it used to be when I would run in the horrid Texas humidity) so I stripped down and turned down the AC.
Then within 10 min or so I was freezing. I turned the AC back up and wrapped up warm but could stop freezing. I finally got a lil more comfortable and then passed out. This is the 2nd time I have falling asleep within 30-45 min after taking only half a doxy, I figure it has something to do with the Fentanyl Patch.
So after sleeping from 4 to 8 I woke up tired but unable to go back to sleep and kinda miserable that I seem to be sleeping what lil life have left away. I did think it was kinda nice that instead of having to be severely depressed or in agony I was just mildly depressed and in a moderate amount of pain. But the longer I was awake the more the pain grew and changed to be more bothersome and upsetting. I thought about taking a sleeping pill to just go back where my dreams are vivid and vibrant (unlike my life), I am healthy and powerful and strong (unlike my life), and there is no pain and rarely any depression (unlike my life). But at the same time that feels a lot like a cop-out or hiding.
But even if it is hiding does that matter? I don't seem to be getting much of anything done when I am awake these days, so does it matter if I am awake at all?
I'm not even all that depressed just being kinda existential ... and lonely.
Tuesday started out similar to the last couple of days to a week with me waking up every 2-3 hours. This time was different though in that every time I went to seep I was involved in very in depth vivid intense dreams. Three different sets of dreams though the last two had a similar theme at least.
So I slept from 6am to 2pm. I woke up so I could make it to a doctor's appointment. I got my shower and and got dressed and except for a lil chest pain I was on track and on time and proud of my self. Then I found that my keys were gone, so I went a lil nuts looking for them, and realized that my best girl who was helping me out yesterday by doing my shopping still had them in her purse. Now I was really starting to panic, but I remembered that I had 2 extra keys made and did a mad search of all the boxes that still make up my room (one of my biggest frustrations since moving in here and one of the most limiting issues in my life these days is that I don't know where anything is anymore and can never find what I need when I need it and going through the boxes is likely to seriously depress me within min anytime I deal with them). The keys were no where to be found. So I called the doctor's office and was lucky enough that there was a cancellation for tomorrow, otherwise I wouldn't have been able to see her for 2 weeks and would have be cut off from B-12 shots!
The panic attack caused me to take a half a doxy (over the counter Doxylamine is actually a sleeping pill, but it works amazingly well as anti-anxiety med) to calm down and it sort of worked but I still felt over heated and suddenly couldn't breath, it felt like the oxygen wasn't coming it (like it used to be when I would run in the horrid Texas humidity) so I stripped down and turned down the AC.
Then within 10 min or so I was freezing. I turned the AC back up and wrapped up warm but could stop freezing. I finally got a lil more comfortable and then passed out. This is the 2nd time I have falling asleep within 30-45 min after taking only half a doxy, I figure it has something to do with the Fentanyl Patch.
So after sleeping from 4 to 8 I woke up tired but unable to go back to sleep and kinda miserable that I seem to be sleeping what lil life have left away. I did think it was kinda nice that instead of having to be severely depressed or in agony I was just mildly depressed and in a moderate amount of pain. But the longer I was awake the more the pain grew and changed to be more bothersome and upsetting. I thought about taking a sleeping pill to just go back where my dreams are vivid and vibrant (unlike my life), I am healthy and powerful and strong (unlike my life), and there is no pain and rarely any depression (unlike my life). But at the same time that feels a lot like a cop-out or hiding.
But even if it is hiding does that matter? I don't seem to be getting much of anything done when I am awake these days, so does it matter if I am awake at all?
I'm not even all that depressed just being kinda existential ... and lonely.
Monday, June 28, 2010
What a choice
Hi all it is Monday night and that means I have to give myself glutathione shot number 4 and since every other shot I have gotten or given myself of the this stuff has really sucked and I recently got informed I should be doing it on the top not side of my thigh (more muscle less fat) I am pretty afraid it is going to hurt A LOT, even more than usual...
As for the title of this post, well yesterday wasn't too bad at all pain wise but was pretty awful emotion wise and ended with a horrid nervous breakdown and making my mom cry and my blood pressure sinking to 74/53 and passing me out... not fun
Today instead, thanks to my good friend Bee being here late last night till now, I have been pretty damn stable (not amazingly but so much better than yesterday), but instead I have been in a lot of pain almost all of the day (ecept when passed out from pain or the fatigue the pain causes).
So my choice seems to be do I want to be out of my mind neurotic and insane or would I rather be in intense pain? Not a nice choice or one I want to deal with.
What would your choice be?
As for the title of this post, well yesterday wasn't too bad at all pain wise but was pretty awful emotion wise and ended with a horrid nervous breakdown and making my mom cry and my blood pressure sinking to 74/53 and passing me out... not fun
Today instead, thanks to my good friend Bee being here late last night till now, I have been pretty damn stable (not amazingly but so much better than yesterday), but instead I have been in a lot of pain almost all of the day (ecept when passed out from pain or the fatigue the pain causes).
So my choice seems to be do I want to be out of my mind neurotic and insane or would I rather be in intense pain? Not a nice choice or one I want to deal with.
What would your choice be?
Sunday, June 27, 2010
depressed/angry
Today hasn't been so bad physically but it has been reasonable nasty emotionally... between the state of world and national politics there doesn't look to be much of a future for anyone, between the state of my illness and my ability to take care of my self there doesn't seem to be much of a future for me!
I have been so angry today I haven't been able to talk to anyone and I have been crying on and off and so frustrated stuck in my damn apartment from emotional lability and dizziness debilitating me from being able to drive, not that I had anywhere to go...
I am so angry right now and I am not even sure what I am even mad at... I just want to scream until it all comes out and then take muscle relaxers or pain killers till I pass out, and pray that when sleep I forget or get over all of this and that tomorrow will be a new day.
I have been so angry today I haven't been able to talk to anyone and I have been crying on and off and so frustrated stuck in my damn apartment from emotional lability and dizziness debilitating me from being able to drive, not that I had anywhere to go...
I am so angry right now and I am not even sure what I am even mad at... I just want to scream until it all comes out and then take muscle relaxers or pain killers till I pass out, and pray that when sleep I forget or get over all of this and that tomorrow will be a new day.
Ugh!!!
Hi to all the not followers and followers
LOL funny that almost none of the people who said I should do this aren't following it
SO as of 6am this morning the sore throat seemed to be gone, and when I woke up at 3pm it was still gone YAY!!
But in its place the nausea that has been plaguing me for over a month now was back with a vengence and the only thing I seem to be able get down and keep down are those "pop ice" popsicles kids love and I am really worried about all the sugar cause it isn't good for my system, my healing throat, and my damn candida.
Why can't things be simple?
On a totally different note my mom has become friends with a professional astrologer with a somewhat similar pain disorder who is trying to find a way to use a person's personal chart to predict relapses or problematic times so that he or she can try to per pare or decompress before those times occur and hopefully lessen the consequences. Unfortunately my mom volunteered me to help him streamline his program. So today I had to go through my pain journal and answer questions and try to figure things out for him and after going through it I now know that I am not exaggerating when I say this relapse has sucked sour spoiled eggs (the imagery comes from me trying to not curse on this blog) and it has definitely been of the longest and continuous of the last 4 years. Even my good days are filled with pain or nausea or depressive crying to some degree. There are no simple straight happy pain or misery of some kind free days for the last 4+ months at the least... it makes me really not want to look at my other pain journals from before February.
Anyone out there in the same boat want to comment... being left with my own thoughts at a point like this is never fun!
LOL funny that almost none of the people who said I should do this aren't following it
SO as of 6am this morning the sore throat seemed to be gone, and when I woke up at 3pm it was still gone YAY!!
But in its place the nausea that has been plaguing me for over a month now was back with a vengence and the only thing I seem to be able get down and keep down are those "pop ice" popsicles kids love and I am really worried about all the sugar cause it isn't good for my system, my healing throat, and my damn candida.
Why can't things be simple?
On a totally different note my mom has become friends with a professional astrologer with a somewhat similar pain disorder who is trying to find a way to use a person's personal chart to predict relapses or problematic times so that he or she can try to per pare or decompress before those times occur and hopefully lessen the consequences. Unfortunately my mom volunteered me to help him streamline his program. So today I had to go through my pain journal and answer questions and try to figure things out for him and after going through it I now know that I am not exaggerating when I say this relapse has sucked sour spoiled eggs (the imagery comes from me trying to not curse on this blog) and it has definitely been of the longest and continuous of the last 4 years. Even my good days are filled with pain or nausea or depressive crying to some degree. There are no simple straight happy pain or misery of some kind free days for the last 4+ months at the least... it makes me really not want to look at my other pain journals from before February.
Anyone out there in the same boat want to comment... being left with my own thoughts at a point like this is never fun!
Saturday, June 26, 2010
I hate colds, and am going to cut off my left leg
Ok the title may sound a lil over the top but I will explain:
I got a sore throat a couple days ago and the sickness itself (using up energy my body doesn't have) and the pain from my throat (real pain tends to trigger Neuro Pain or just make the pain I am already having much worse) has been making my life hell.
Yesterday, June 25th, was pretty much non stop pain at any point I wasn't drugged into sleep (thank G*d for muscle relaxers). I even had the unlucky experience of throwing up my percocet in the morning so the day started off awful and went down hill from there.
By the evening I was in such a bad state I could barely talk at one point and my mother had to call multiple friends to see if anyone could come help me. I was out of drinks (the water in College Station is so disgusting it just makes me sicker if I am forced to drink it) and food that my stomach could handle and even some of my meds. Finally I got a hold of someone who wasn't out of town, injured from a car accident, partying cause it was Friday, or so overprotective they would have driven me to madness on top of the agony. My friends and ex-mentee Henry came by and not only went shopping for me but cooked me some dinner and brought it to me since I was talking again but still not up for walking.
One of the reasons I couldn't walk is the same as the reason I want cut off my left leg... on and off for the last week I have been a reacurring pain in my upper left thigh. It feels like someone is slicing into my leg and then trying the dig into the flesh with a dull knife... it is absolute agony and tends to make me scream almost every time. On top of that by the time the pain killers kick in (20-40 min) the agony is over and I just end up drugged (which I HATE)
Today my cold was a bit better and the pain a lot less then yesterday (still horrid but not death wish awful), then my leg went off again. I had the thought that maybe between cold meds and pain meds I thought maybe I could go out and have a lil fun for the first time in a week (not that loosing a bikini contest to a girl who looks like a 12 year old boy was all that much fun last Saturday, but hanging with Bee and Stephen and watching Brock and KJ do the robot def was:), but the smoke and other crap in all the clubs in B/CS will prob have my sore throat back to full agony by tomorrow and if it does I will be stuck in the apartment not moving for at least 2 or 3 days... and I just don't know if the chance of fun is worth the chance of agony?
SO tonight I get to be stuck in the house and my housemate just came back for the first time all week (not Thursday when he was supposed to drive me to a doc apt, and got to have a panic attack that last an hour on the way there) and he wants to be all mother hen and over protective and talk to me like a baby "aww sweetheart are you ok?" and pat my head... NO I AM NOT OK!!!
I haven't been ok for years but I have especially been NOT OK for the last 8 months that I have been in a relapse (since I got swine flu last fall), and I am so damn sick of that G*d damn phrase that I think I will start hurting people who continue to ask it!
Ok so that is an update of my cold and the last 2 days.... Talk to you all again soon :)
I got a sore throat a couple days ago and the sickness itself (using up energy my body doesn't have) and the pain from my throat (real pain tends to trigger Neuro Pain or just make the pain I am already having much worse) has been making my life hell.
Yesterday, June 25th, was pretty much non stop pain at any point I wasn't drugged into sleep (thank G*d for muscle relaxers). I even had the unlucky experience of throwing up my percocet in the morning so the day started off awful and went down hill from there.
By the evening I was in such a bad state I could barely talk at one point and my mother had to call multiple friends to see if anyone could come help me. I was out of drinks (the water in College Station is so disgusting it just makes me sicker if I am forced to drink it) and food that my stomach could handle and even some of my meds. Finally I got a hold of someone who wasn't out of town, injured from a car accident, partying cause it was Friday, or so overprotective they would have driven me to madness on top of the agony. My friends and ex-mentee Henry came by and not only went shopping for me but cooked me some dinner and brought it to me since I was talking again but still not up for walking.
One of the reasons I couldn't walk is the same as the reason I want cut off my left leg... on and off for the last week I have been a reacurring pain in my upper left thigh. It feels like someone is slicing into my leg and then trying the dig into the flesh with a dull knife... it is absolute agony and tends to make me scream almost every time. On top of that by the time the pain killers kick in (20-40 min) the agony is over and I just end up drugged (which I HATE)
Today my cold was a bit better and the pain a lot less then yesterday (still horrid but not death wish awful), then my leg went off again. I had the thought that maybe between cold meds and pain meds I thought maybe I could go out and have a lil fun for the first time in a week (not that loosing a bikini contest to a girl who looks like a 12 year old boy was all that much fun last Saturday, but hanging with Bee and Stephen and watching Brock and KJ do the robot def was:), but the smoke and other crap in all the clubs in B/CS will prob have my sore throat back to full agony by tomorrow and if it does I will be stuck in the apartment not moving for at least 2 or 3 days... and I just don't know if the chance of fun is worth the chance of agony?
SO tonight I get to be stuck in the house and my housemate just came back for the first time all week (not Thursday when he was supposed to drive me to a doc apt, and got to have a panic attack that last an hour on the way there) and he wants to be all mother hen and over protective and talk to me like a baby "aww sweetheart are you ok?" and pat my head... NO I AM NOT OK!!!
I haven't been ok for years but I have especially been NOT OK for the last 8 months that I have been in a relapse (since I got swine flu last fall), and I am so damn sick of that G*d damn phrase that I think I will start hurting people who continue to ask it!
Ok so that is an update of my cold and the last 2 days.... Talk to you all again soon :)
Hi
Hi I am Jessica Cunningham and this is my Blog. The purpose of writing this is to let friends and family know what has happened to me, what is going on presently in my life and why I sometimes seem so depressed and/or distant.
I figured the best place to start was with a quick overview, which happens to be from my profile so if you read the whole thing there is no need to read this :)
I am a 26 year old female suffering from multiple neurological illnesses and autonomic dysfunctions. I have Myalgic Encephalomyelitis "M.E." (which is a form of Chronic Fatigue Syndrome that includes severe and extremely debilitating pain), Postural Orthostatic Tachycardia Syndrome "POTS" (which means my blood pressure doesn't regulate correctly and for me I don't get enough blood or for that matter oxygen to my brain), I also have Hypovolemia (which is low blood volume, caused by my cells not absorbing hydration by mouth), and Fybromyalgia (sever muscle pain and skin painful to the touch)
That is who I am now, but to understand this blog you need to know who I used to be:
I was an extremely athletic and competitive child. I started dancing at age 4, I started traveling to other countries at 7 the same age at all of 60 pounds I decided I was going to lift people twice my weight off the ground (something I continued doing for most of my life). I was on my summer swim team and a junior life guard. I used to get into fights in middle school (but most will tell you it was to protect others). I was the first and only girl on my high school wrestling team. I was one of the first girls in country officially on a men's collegiate wrestling team. I used to bench press 160 and squat 250 max and I weighed 110 at the time. I trained for 4 years, first in PLC then in NROTC, to be a Marine Officer (the only thing I have ever really wanted to do with my life).
I was in the Corps of Cadets at Texas A&M when I first got sick and all of that changed. Now I am lucky if I can get out 5-10 push ups and 10 weightless squats, many days I can't even walk let alone try to exercise. I spend about 70% of my time overall on my couch, I rarely get out and don't have all that many visitors but I figure I have gone from the outgoing protector to the needy and depressing shut in so I don't blame people too much.
I figured the best place to start was with a quick overview, which happens to be from my profile so if you read the whole thing there is no need to read this :)
I am a 26 year old female suffering from multiple neurological illnesses and autonomic dysfunctions. I have Myalgic Encephalomyelitis "M.E." (which is a form of Chronic Fatigue Syndrome that includes severe and extremely debilitating pain), Postural Orthostatic Tachycardia Syndrome "POTS" (which means my blood pressure doesn't regulate correctly and for me I don't get enough blood or for that matter oxygen to my brain), I also have Hypovolemia (which is low blood volume, caused by my cells not absorbing hydration by mouth), and Fybromyalgia (sever muscle pain and skin painful to the touch)
That is who I am now, but to understand this blog you need to know who I used to be:
I was an extremely athletic and competitive child. I started dancing at age 4, I started traveling to other countries at 7 the same age at all of 60 pounds I decided I was going to lift people twice my weight off the ground (something I continued doing for most of my life). I was on my summer swim team and a junior life guard. I used to get into fights in middle school (but most will tell you it was to protect others). I was the first and only girl on my high school wrestling team. I was one of the first girls in country officially on a men's collegiate wrestling team. I used to bench press 160 and squat 250 max and I weighed 110 at the time. I trained for 4 years, first in PLC then in NROTC, to be a Marine Officer (the only thing I have ever really wanted to do with my life).
I was in the Corps of Cadets at Texas A&M when I first got sick and all of that changed. Now I am lucky if I can get out 5-10 push ups and 10 weightless squats, many days I can't even walk let alone try to exercise. I spend about 70% of my time overall on my couch, I rarely get out and don't have all that many visitors but I figure I have gone from the outgoing protector to the needy and depressing shut in so I don't blame people too much.
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