Here's another video I put out, but his one includes my harp.
http://www.youtube.com/watch?v=L8xuxUKUTKE
Saturday, May 29, 2010
Thursday, May 27, 2010
Feelings of uselessness
For the past couple of months I have been battling with my health from a backlash of collapsing. There is no way of knowing when and how you will be struck down in your health.
Today, like so many, I have had another headache that pierced into me and puts me in bed. I know it's not just an ordinary headache, but one that starts in the base of my head and spreads down my spine, then into my muscles. I rest and fall asleep, that's all I can do. What a useless existance.
I was realizing today that there is nothing I can do to go to work. I can come up with some alternative ideas of work out of my home, but I can't even make plans of anything consistant. There are obsticles in every direction. I am so tired of this. My nerves are wrung out from these headaches and inflammation. Yes, it effects the nerves, not in a psychological way, but in a physical way. If you've ever experienced a severe allergy reaction, you will understand how it effects the nerves. I hate it. I can't handle listening to my little dog bark, everything has to be quiet in the house.
This moment will pass when my system levels out again, but then I know this will happen again. I wish there was a miracle cure. People try to give their imput, but they are not living in this health dilema. People think there's a simple solution to the problem... like take some vitamins (it's a neurological illness not a lack of vitamins), or have faith, hope, be positive ( after trying all the above you begin to wonder about those options when you see no results... it's never ending and hopeless really), or exercise (deadly to the system, it causes you to relapse), or just go out and do something that will make you happy (that costs MONEY, for gas, etc, which I don't have). I could go on.
The reality is, this illness wipes out your life. For some they are financially o.k. and for others they have their spouses. After a couple of years of being at home you lose your social life and your resources of friends dwindle out. People don't want to be around sick people or hear anything about it. People want to be charmed, entertained and know that there's something in it for them. I have nothing to give. I feel useless.
When you feel useless and like you have no purpose anymore... what's the point to life. I am struggling with holding onto what I have with the threat and reality of it all being taken away. I have no strength to fight for what's left. I am sick and tired. That's a fact. I have been battling with the insurance company since day one and I know it will be never ending. When am I able to rest? How can I relax? Knowing my finances are always being threatened. I have had my power and phone cut off and close to losing my home. I have had some help that came just in the nick of time. Wow. Is this how I'm suppose to live now? Always on the edge... this stresses me out. Stress has been added to me since I've been ill. Stress did not cause this. Why in the hell would anybody want to continue on in this kind of existance.
Today I wonder what my life is for. How can I not have feelings of uselessness? What do I have to hope for or look forward to. My next meal, my next paid bill, some extra money for some small luxury. Isn't that exciting.
I have never desired to play the lottery, but it's interesting how a persons mind changes when they're financially in ruin. If my finances were secure, then I could at least relax and rest properly. It wouldn't take the illness away, but it would be a bit more bareable and I could at least look forward to doing somethings that I couldn't do otherwise. People don't realize how very fortunate they are that they can work or walk a distance or plan their days knowing they can commit to it.
I had someone say to me, a pastors wife, who had finished complaining about how they don't have enough money to meet their bills... (they have a very nice home, with very nice furniture and two newer vehicles with payments and their children are all in activities and they drive them out of town to play their games and they have cable, etc...) and complaining that she needs to find work, "I know a man who has losts of money, but he's ill and can't enjoy any of it. How difficult for him and his wife." Then she continued, "If I had a choice I would chose to be poor rather than sick. At least I could still work." I said to her, "The rich man can afford to be sick and the poor person can at least still have the ability to work." As for me... I am neither rich nor have the ability to work.
I confess I was annoyed at our visit because when she came into my living room she asked me about my lights that were turned on. ?? She knew I had my power previously cut off because I couldn't meet the bill. With the power cut off the furnace wouldn't work either and this caused me to collapse because my system can't take the cold. I asked her what she ment when she pointed to my lights. She stumbled about with her answer, so I came out with it. I said, "You mean am I paying the bill?" She was wondering why I had my lights on if I was having difficulty paying my bill? I was irked by her ignorant question about my power. I should have turned off the lights and had a visit in the dark with her. I wonder what she would have thought then? How stupid! It's night... the lights need to be turned on. Maybe I should have lit some candles. The pathetic thing is that people don't want to see you have any pleasure of any kind and THEY watch how you're spending your money. I'm not taking luxuries over necessities!
That kind of Christian attitude is truly alarming. When people see you down and out, they expect to keep seeing you there. The fact is I can't change what's happened to my life physically or finacially. I am barely coping. And to top it off, you get people, who are well and not financially stressed, giving you narrow minded advice for your situation that does no good and with knowing very little about your condition. Can you tell I'm venting... Yes, it's been a bad day. And I'm allowed to have these once in a while. No, people don't always turn positive in a dim situation. When you're down, you are down and that's just how you cope sometimes.
On the upside of things I must say, and I reflect on this, I had a brother and sister in Christ give me a helping hand a couple of times that just blew me away. They didn't just speak the word... they did the word. The bible says, "Don't just be hearers of the word, but be doers." Many times Christians say, "I'll pray for you." I find that almost condesending. That's their easy way out of saying... I don't want to commit to helping you in any real or material way, so I'll just pray... it doesn't cost me anything. I have seen Christians who have very little give more than those Christians who have more than enough for themselves. To each his own, but that is not true Christianity. I could write a book on the subject.
Well, that's all I have to say for now. I needed to vent. It's been a bad day and I need to lay down again. Who really wants to hear it. This blog is not being read, so ... oh, well, just as well.
Ya... clearly I'm down and out today. Tomorrow is another day. Maybe I'll have some good news. Maybe I'll hear something that will lift my spirit. Maybe I'll get some relief. Maybe tomorrow I won't feel so useless.
Today, like so many, I have had another headache that pierced into me and puts me in bed. I know it's not just an ordinary headache, but one that starts in the base of my head and spreads down my spine, then into my muscles. I rest and fall asleep, that's all I can do. What a useless existance.
I was realizing today that there is nothing I can do to go to work. I can come up with some alternative ideas of work out of my home, but I can't even make plans of anything consistant. There are obsticles in every direction. I am so tired of this. My nerves are wrung out from these headaches and inflammation. Yes, it effects the nerves, not in a psychological way, but in a physical way. If you've ever experienced a severe allergy reaction, you will understand how it effects the nerves. I hate it. I can't handle listening to my little dog bark, everything has to be quiet in the house.
This moment will pass when my system levels out again, but then I know this will happen again. I wish there was a miracle cure. People try to give their imput, but they are not living in this health dilema. People think there's a simple solution to the problem... like take some vitamins (it's a neurological illness not a lack of vitamins), or have faith, hope, be positive ( after trying all the above you begin to wonder about those options when you see no results... it's never ending and hopeless really), or exercise (deadly to the system, it causes you to relapse), or just go out and do something that will make you happy (that costs MONEY, for gas, etc, which I don't have). I could go on.
The reality is, this illness wipes out your life. For some they are financially o.k. and for others they have their spouses. After a couple of years of being at home you lose your social life and your resources of friends dwindle out. People don't want to be around sick people or hear anything about it. People want to be charmed, entertained and know that there's something in it for them. I have nothing to give. I feel useless.
When you feel useless and like you have no purpose anymore... what's the point to life. I am struggling with holding onto what I have with the threat and reality of it all being taken away. I have no strength to fight for what's left. I am sick and tired. That's a fact. I have been battling with the insurance company since day one and I know it will be never ending. When am I able to rest? How can I relax? Knowing my finances are always being threatened. I have had my power and phone cut off and close to losing my home. I have had some help that came just in the nick of time. Wow. Is this how I'm suppose to live now? Always on the edge... this stresses me out. Stress has been added to me since I've been ill. Stress did not cause this. Why in the hell would anybody want to continue on in this kind of existance.
Today I wonder what my life is for. How can I not have feelings of uselessness? What do I have to hope for or look forward to. My next meal, my next paid bill, some extra money for some small luxury. Isn't that exciting.
I have never desired to play the lottery, but it's interesting how a persons mind changes when they're financially in ruin. If my finances were secure, then I could at least relax and rest properly. It wouldn't take the illness away, but it would be a bit more bareable and I could at least look forward to doing somethings that I couldn't do otherwise. People don't realize how very fortunate they are that they can work or walk a distance or plan their days knowing they can commit to it.
I had someone say to me, a pastors wife, who had finished complaining about how they don't have enough money to meet their bills... (they have a very nice home, with very nice furniture and two newer vehicles with payments and their children are all in activities and they drive them out of town to play their games and they have cable, etc...) and complaining that she needs to find work, "I know a man who has losts of money, but he's ill and can't enjoy any of it. How difficult for him and his wife." Then she continued, "If I had a choice I would chose to be poor rather than sick. At least I could still work." I said to her, "The rich man can afford to be sick and the poor person can at least still have the ability to work." As for me... I am neither rich nor have the ability to work.
I confess I was annoyed at our visit because when she came into my living room she asked me about my lights that were turned on. ?? She knew I had my power previously cut off because I couldn't meet the bill. With the power cut off the furnace wouldn't work either and this caused me to collapse because my system can't take the cold. I asked her what she ment when she pointed to my lights. She stumbled about with her answer, so I came out with it. I said, "You mean am I paying the bill?" She was wondering why I had my lights on if I was having difficulty paying my bill? I was irked by her ignorant question about my power. I should have turned off the lights and had a visit in the dark with her. I wonder what she would have thought then? How stupid! It's night... the lights need to be turned on. Maybe I should have lit some candles. The pathetic thing is that people don't want to see you have any pleasure of any kind and THEY watch how you're spending your money. I'm not taking luxuries over necessities!
That kind of Christian attitude is truly alarming. When people see you down and out, they expect to keep seeing you there. The fact is I can't change what's happened to my life physically or finacially. I am barely coping. And to top it off, you get people, who are well and not financially stressed, giving you narrow minded advice for your situation that does no good and with knowing very little about your condition. Can you tell I'm venting... Yes, it's been a bad day. And I'm allowed to have these once in a while. No, people don't always turn positive in a dim situation. When you're down, you are down and that's just how you cope sometimes.
On the upside of things I must say, and I reflect on this, I had a brother and sister in Christ give me a helping hand a couple of times that just blew me away. They didn't just speak the word... they did the word. The bible says, "Don't just be hearers of the word, but be doers." Many times Christians say, "I'll pray for you." I find that almost condesending. That's their easy way out of saying... I don't want to commit to helping you in any real or material way, so I'll just pray... it doesn't cost me anything. I have seen Christians who have very little give more than those Christians who have more than enough for themselves. To each his own, but that is not true Christianity. I could write a book on the subject.
Well, that's all I have to say for now. I needed to vent. It's been a bad day and I need to lay down again. Who really wants to hear it. This blog is not being read, so ... oh, well, just as well.
Ya... clearly I'm down and out today. Tomorrow is another day. Maybe I'll have some good news. Maybe I'll hear something that will lift my spirit. Maybe I'll get some relief. Maybe tomorrow I won't feel so useless.
Thursday, May 6, 2010
It's All About M.E.
I'm putting up videos It's All About M.E. explaining Myalgic Encephalomyelitis, with a little fun added to it. Check out my links to view. Keep checking back to see if I've added some more.
Monday, May 3, 2010
Myalgic Encephalomyelitis and Symptoms
What is M.E.?
- Myalgic Encephalomyelitis is a multi-system neurological disease, recognized by the World Health Organization (WHO). It effects multi-systems in the body. Neurological System; Immune System; Endocrine System.
- M.E. has similarities to multiple sclerosis, Lupus and Polio (poliomyelitis)
- M.E. is the result which occurs to the CNS by way of a virus.
- Researchers around the world are working on a diagnostic test and a cure. Researchers lack funding and need more support. This is imperative since millions are effected around the world with M.E.
- Many doctors do not even know what M.E. is. And those that have some knowledge do not have accurate knowledge. They liken it to Chronic Fatigue Syndrom (CFS), but the two are not synonymous. Extreme fatigue is only one symptom of M.E.
- More than 60 symptoms have been documented for M.E.
- M.E. can also effect cognitive functions, cardiac, cardiovascular, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal functions. The body functions cannot maintain balance.
- It can cause death
- Misdiagnosis causes more harm when brushed off as psychological. Anti-depressants do not aide in healing and is a misguided treatment. See Sophia's story in my links.
- Advice by Physicians to exercise is dangerous, as over exertion can cause heart failure to an already compromised system. Once you have a qualified doctor diagnose you check with your doctor about moderate exercise.
- M.E. patients are not lazy or depressed people. Although depression can set in, as is normal, for long term illness, added with a lack of understanding, lack of support and loss of hope for healing.
- Walking or standing triggers the system to collapse.
- Being in loud social settings, socializing by talking, laughing or listening can cause a relapse.
- food sensitivities
- cold sensitivity
- headaches
- dizziness/vertigo
- paralysis (temporary)
- neck, spine, lower back pain,
- muscle pain, muscle spasms
- temporal lobe and other types of seizures
- light, sunlight, brightness, noise sensitivity
- nausea
- shortness of breathing
- irregular blood pressure
- heart muscle strain
- respiratory difficulties
- sore joints
- extreme fatigue
- brain fog
- short term memory loss
- cognitive dysfunction
Still In Bed
For the past week or longer I've been battling dizzy headaches, pain in my neck, spine, lower back to my feet and I feel pain in my heart like cramping almost. I feel sick to my stomach periodically, which is par for the course when my head and spine are lite up. Medication is not touching it.
I have now been in bed for two days solid and off and on for the last week and a half. I was taken to emergency by some friends almost a couple of weeks ago. It was devastating. I was having seizure type episodes, not able to speak for myself or move other than my muscle spasms. The doctors in emerg. have no clue as to what M.E. is and treat me poorly. When I'm in this state I can't speak for myself and they think I can. I never want to go to emerg. since they don't do anything for me there, unfortunately someone else brings me and I don't have a choice in the matter. People panic when they see me in this collapsed state. I just need to be put into bed and made comfortable while my system settles back and stabilizes.
One neurologist suggested, reverse paralysis locked in syndrome. (I'll explain that in another blog, not tonight) Now, we are checking out that avenue. There are still tests that need to be done. Some of which I know I will fail, like the stress test and the table tilt test. I can't stand too long or walk too much before my heart feels like it's swelling up, my blood pressure rises and I collapse. Setting up these tests all take so much time. I am now awaiting to hear about getting an MRA and the others I just mentioned.
Some of the doctors I've seen are medically ignorant, uneducated jerks! Doctors don't keep current on medical information and often couldn't care less. They want the $$ and the easy cases. How about a doctor who truly has a heart for the profession, willing to work with a patient and do the research. Fortunately I do have a decent doctor, but not in this area. I had to go to the big city of Calgary.
The last few days have been frustrating laying here helplessly... thinking, thinking, thinking. How exciting is that? I have no energy and if I do anything in the house it wipes me back down, putting me 10 feet back... usually into bed. Summer is coming and I want to go out and enjoy it. I could feel that beautiful breeze through my window today.
I am waiting to get my wheelchair. It's now in. I have one I'm borrowing from red cross, but it's so heavy I can't pull it out of the car. The new one I'm getting is lighter, but I have to pay $500.00 to get it. It's partly paid for by a program, but I have to pay the other amount, which I don't have. Oh, this is so frustrating.
It was income tax time and I spent the last of my money on that. My son had to pay income tax and all his money is gone as well. My son has done so much to help me out in so many ways. I always feel so bad for him because he's so young and trying to get his life started, but he has me in this pathetic position.
The food situation is pathetic right now. There are no veggies, fruit, meat or potatoes left. All I have now is a bun, some crackers, pretzels and one box of macaroni. Gee, when you're ill this doesn't help. Battling with insurance companies for your money is demeaning and exhausting. I use to have a good paying job at the hospital. Now I've been reduced to this...
Last fall was very sad. We made it through by people helping at the most difficult times imaginable. My animals starved for a few days, as we did also, through the fall and December. I was just numb about the whole thing. What can you do? Cry, but that doesn't help. It is what it is. I've never asked anybody for anything, but there was always something that came through in the most difficult times.
My son told me his faith has grown in God even more as a result, because he saw how we would get a break through just in time,... every time. He's such a beautiful young man and I love him to bits for his loyalty.
I find myself these days thinking that I don't want to go out into public or social incase I collapse or start to not feel well. You know people don't want to hear or deal with your physical burden. I dont' want to deal with it, but I'm have to. I get tired of explaining it to new people I meet. If I social with them they need to know incase I collapse one day. I am really hating this. I feel so trapped by this dam illness! So I will blog about it and that way I can vent off what I'm feeling and dealing with. Then no one has to read it if they don't want to.
Oh, it's so late. I'm still in pain and the advil and bonamine is not working. Sleeping during the day has messed up my night sleep. I'll watch another movie and see if that'll put me to sleep.
I have now been in bed for two days solid and off and on for the last week and a half. I was taken to emergency by some friends almost a couple of weeks ago. It was devastating. I was having seizure type episodes, not able to speak for myself or move other than my muscle spasms. The doctors in emerg. have no clue as to what M.E. is and treat me poorly. When I'm in this state I can't speak for myself and they think I can. I never want to go to emerg. since they don't do anything for me there, unfortunately someone else brings me and I don't have a choice in the matter. People panic when they see me in this collapsed state. I just need to be put into bed and made comfortable while my system settles back and stabilizes.
One neurologist suggested, reverse paralysis locked in syndrome. (I'll explain that in another blog, not tonight) Now, we are checking out that avenue. There are still tests that need to be done. Some of which I know I will fail, like the stress test and the table tilt test. I can't stand too long or walk too much before my heart feels like it's swelling up, my blood pressure rises and I collapse. Setting up these tests all take so much time. I am now awaiting to hear about getting an MRA and the others I just mentioned.
Some of the doctors I've seen are medically ignorant, uneducated jerks! Doctors don't keep current on medical information and often couldn't care less. They want the $$ and the easy cases. How about a doctor who truly has a heart for the profession, willing to work with a patient and do the research. Fortunately I do have a decent doctor, but not in this area. I had to go to the big city of Calgary.
The last few days have been frustrating laying here helplessly... thinking, thinking, thinking. How exciting is that? I have no energy and if I do anything in the house it wipes me back down, putting me 10 feet back... usually into bed. Summer is coming and I want to go out and enjoy it. I could feel that beautiful breeze through my window today.
I am waiting to get my wheelchair. It's now in. I have one I'm borrowing from red cross, but it's so heavy I can't pull it out of the car. The new one I'm getting is lighter, but I have to pay $500.00 to get it. It's partly paid for by a program, but I have to pay the other amount, which I don't have. Oh, this is so frustrating.
It was income tax time and I spent the last of my money on that. My son had to pay income tax and all his money is gone as well. My son has done so much to help me out in so many ways. I always feel so bad for him because he's so young and trying to get his life started, but he has me in this pathetic position.
The food situation is pathetic right now. There are no veggies, fruit, meat or potatoes left. All I have now is a bun, some crackers, pretzels and one box of macaroni. Gee, when you're ill this doesn't help. Battling with insurance companies for your money is demeaning and exhausting. I use to have a good paying job at the hospital. Now I've been reduced to this...
Last fall was very sad. We made it through by people helping at the most difficult times imaginable. My animals starved for a few days, as we did also, through the fall and December. I was just numb about the whole thing. What can you do? Cry, but that doesn't help. It is what it is. I've never asked anybody for anything, but there was always something that came through in the most difficult times.
My son told me his faith has grown in God even more as a result, because he saw how we would get a break through just in time,... every time. He's such a beautiful young man and I love him to bits for his loyalty.
I find myself these days thinking that I don't want to go out into public or social incase I collapse or start to not feel well. You know people don't want to hear or deal with your physical burden. I dont' want to deal with it, but I'm have to. I get tired of explaining it to new people I meet. If I social with them they need to know incase I collapse one day. I am really hating this. I feel so trapped by this dam illness! So I will blog about it and that way I can vent off what I'm feeling and dealing with. Then no one has to read it if they don't want to.
Oh, it's so late. I'm still in pain and the advil and bonamine is not working. Sleeping during the day has messed up my night sleep. I'll watch another movie and see if that'll put me to sleep.
Monday, April 26, 2010
The next day...
This morning I'm feeling the pain in my body (head, neck, spine, lower back, feet, joints) and extremely fatigued. My heart is feeling like it's cramping. That's the only was I can explain it.
Last night, I went out to some friends for dinner. I was a little reluctant since I was still recovering from having a collapse a few days earlier. Days afer I have a collapse I get a headache, slight dizziness, and what feels like inflamation throughout from my head, neck, spine to my lower back and feet. After I lay down for a while, when I get up, every joint feels stiff and my feet hurt? Why this is I don't know, but it happens everytime.
I had rested partly through the day yesterday and then did some laundry. I still felt run down. My battery was only half charged. When I was asked to come over for dinner I really wanted to go, so I did. I thought it would be a low key visit. So I went, even though I still had a headache that was at the base of my neck/head.
Shorty after arriving I got visiting with a gal there and I listened to her adventures and just kept my talking mininal. Even the listening was straining because you also offer expressions like smiling, laughter and interjections. I could feel as the night was progressing so was my condition. After a while my left arm jerked a few times, this is the first warning, I knew I needed to get going. I was starting to zone out and knew if I pushed myself I would collapse again.
It's hard to get together with people when they don't understand or fully know what's wrong with you or even what to do. It makes it hard to get to know new people, because they have to be at least aware of my conditon incase I collapse, so it doesn't freak them out. But really nobody wants to hear about it, they just want to have a good time. So even though you don't feel great you don't want to bust up the fun, so you just leave.
When my system starts to take me out, it makes it very difficult to socialize. So you either stay in bed to recoup or you simply don't go out. This could be weeks or even months. When you're on a down time people begin to think it's depression. This frustrates me more than anything. I am not a depressed person, however, it does become a downer when you're house bound for a while and your social dies out. That's pretty normal to feel.
If I'm feeling well I usually load up my day with all the things I need and want to do. This illness has nothing to do with laziness or stress issues. When the battery has no charge or very little there's not much you can do. You have to wait for it to recharge. My battery doesn't hold a charge very well.
If you go to The Humming Bird's website on M.E. it gives a good description on this illness. Check it out in my links.
I'll talked about reverse paralysis locked in syndrome a bit later. Something a neurologist mentioned to me, which is currently being investigated. Just watch for this title.
Last night, I went out to some friends for dinner. I was a little reluctant since I was still recovering from having a collapse a few days earlier. Days afer I have a collapse I get a headache, slight dizziness, and what feels like inflamation throughout from my head, neck, spine to my lower back and feet. After I lay down for a while, when I get up, every joint feels stiff and my feet hurt? Why this is I don't know, but it happens everytime.
I had rested partly through the day yesterday and then did some laundry. I still felt run down. My battery was only half charged. When I was asked to come over for dinner I really wanted to go, so I did. I thought it would be a low key visit. So I went, even though I still had a headache that was at the base of my neck/head.
Shorty after arriving I got visiting with a gal there and I listened to her adventures and just kept my talking mininal. Even the listening was straining because you also offer expressions like smiling, laughter and interjections. I could feel as the night was progressing so was my condition. After a while my left arm jerked a few times, this is the first warning, I knew I needed to get going. I was starting to zone out and knew if I pushed myself I would collapse again.
It's hard to get together with people when they don't understand or fully know what's wrong with you or even what to do. It makes it hard to get to know new people, because they have to be at least aware of my conditon incase I collapse, so it doesn't freak them out. But really nobody wants to hear about it, they just want to have a good time. So even though you don't feel great you don't want to bust up the fun, so you just leave.
When my system starts to take me out, it makes it very difficult to socialize. So you either stay in bed to recoup or you simply don't go out. This could be weeks or even months. When you're on a down time people begin to think it's depression. This frustrates me more than anything. I am not a depressed person, however, it does become a downer when you're house bound for a while and your social dies out. That's pretty normal to feel.
If I'm feeling well I usually load up my day with all the things I need and want to do. This illness has nothing to do with laziness or stress issues. When the battery has no charge or very little there's not much you can do. You have to wait for it to recharge. My battery doesn't hold a charge very well.
If you go to The Humming Bird's website on M.E. it gives a good description on this illness. Check it out in my links.
I'll talked about reverse paralysis locked in syndrome a bit later. Something a neurologist mentioned to me, which is currently being investigated. Just watch for this title.
Sunday, April 25, 2010
Introduction Continued Part II
This is now Sunday April 25/10. I feel a little more restored than I did the last couple of days. I'll continue my introduction now...
A twenty year illness surfaces (this part explains the beginning of this illness)
It was over two years ago (2007) that my health took a turn for the worse, to the point I had to stop working. I had been experiencing most of these symptoms for years periodically, but it hadn't bothered me in a while. I might only have a few episodes a year. I was once hospitalized over ten years ago for a week because my system shut down completely leaving me in a paralyzed state. The doctors never figured it out and I never pursued it after I was better. I just figured it went away. But it didn't go away completely.
Where it all began
When I was in my early twenties I had become extremely ill with flu like symptoms. I had fever, chills, extreme sweating, swollen throat and cold sores. I had never had a cold sore before this time and knew I had gotten it from my boyfriend / future husband. I really didn't know what they were. I thought they were just pimples. NOT. I was so sick a doctor came to my apartment and gave me antibiotics. One night I was dilirious and sweat right through the house coat, drenching the sheets. My boyfriend rang out the house coat in the bathtub. I am a petite women and really don't sweat noticeably, only if I workout really hard I might get some small beads of sweat on my nose. So this was very unusual for me. I was off work for three weeks.
It would be after this time that I started getting an unusual symptom. After work I would feel so exhausted and when I laid down to rest my left arm started twitching, flinging my arm across my chest. It wouldn't stop. My husband and I went to emerg. This was so unusual. The doctor ordered a CAT SCAN. When I went to get this done the technician told me this dye was the least likely to cause an allergy reaction. I wasn't concerned, since they said it was safe.
The minute the dye was injected I felt it hit my head and it felt like it was going to kill me... my head and eyes started to shut down. As quickly as I could, I announced I was going to pass out!! They quickly injected me with medication to stop the reaction. I instantly swelled causing my breathing to become difficult and I felt drowsy all at the same time because of the medicine. Thank goodness they had it ready. My left arm started twitching out when this happened because my body was jolted.
After a short while they aborted the dye plan and just put me into the machine. I don't know if they could even get a great picture without the dye, but they said they could still do it. It apparently showed nothing.
I was later sent to a neurologist. He was an impatient man and had an air about him I didn't like. He turned my head and I was dizzy both ways. He brushed me off as it was only stress. I couldn't imagine what I would have been stressed about. I was newly married and a happy girl. I knew this was an unusual symptom and knew it wasn't from stress. So I didn't pursue it any further. I had lost confidence in the doctors. I wasn't one to go to the doctors to complain anyways and I wasn't hurting anywhere so I left it. My left arm for many years would still twitch out if I over exerted myself. It never twitched out if I was emotionally stressed.
I was always an active person and physically fit. I liked to do a lot of things and just did it. But then after I had my two children I began to collapse at home. I could always feel it coming on so I would go to the couch and lay down. The first time it happened my whole body shut down causing my body to be in paralyzed state. I was coherent and could feel my body. My eyes were fixed only enabling me to blink slowly. My left arm would twitch out and that was it. This lasted for about a half hour and then I slowly came out of it and felt very slow. There was no pain so I never went to the doctors.
This would happen periodically over the next few years. Until finally I was having more episodes like this and they were happening more often. Then one day after I had an episode my friend suggested I go to the doctors. I realized then that something was going wrong and I should find out. When I walked into the doctor's office I was standing at the desk and then I collapsed. They didn't know why I had come in. But there I was on the floor jerking and paralyzed. Again I could hear and feel everything and my eyes were fixed only blinking slowly.
I was sent to the next city closest that could do more testing. I was there for a week. They did an eeg and some blood work, but nothing too extensive. I was coming in and out of this state of paralysis for the next week. One night it was at the point my breathing had shallowed down to the point it even stopped. I was paralyzed I couldn't hit the buzzer for the nurse... I couldn't take that breath and I was scared! It went as far as it could go and then my breathing came back. What was that all about now? This was new. This happened several times that night. This was now concerning me that this could turn seriously life threatening.
In the end the doctors couldn't figure this out and just called it stress. I was so appalled at their lack of investigation. When doctors don't know what's wrong they call it stress. I have discovered doctors learn the basics and then study whatever they want from the point of their graduation. It's their choice if they want to learn more.
That was the worse time I had with the collapsing and then it pittered out. There was no rhyme or reason. I didn't let it consume me. I just carried on as before. I was a stay home mom raising my children so I had no worries. If I didn't feel well I just simply laid down so it would escalate to the point of collapsing me.
When we moved out to the country and started to have a little hobby farm with chickens, etc., there was work to be done. Some mornings when I would go out to the pond to pick up buckets of water, early morning, and I would feel suddenly sick to my stomach feeling instantly drained. I knew I was going to collapse, so I charged to the house and on the way I was already shutting down. I couldn't speak and my body was going numb, then I would flop on the bed jerking about. This would last about an hour. After I came out of it, I was very slow with my speech and movements after. Every single time I've collapsed I was coherent and could feel everything. My body felt like it was in a deep sleep and there was nothing I could do to wake it up.
Several years later... (I was now working full-time providing for myself as a single mom)
2007
Since being in a fulltime position at work I had been feeling out of sorts for several months and noticed my memory was glitching way too much, so I went to the doctors to find out if cortisol levels were out or my hormones. My thyroid had been out for a few years and was taking .25mg of synthroid which helped through that time. After work I would go home completely exhausted and run down so I didn't do much, just rested. My blood work didn't show anything unusual.
By the next month I had been getting a lot of vertigo and just took tylenol to try and curb this headache dizzy feeling. It was hard at work becuase you have to move quickly and be on the ball. This dizziness was slowing me down and frustrating my co-workers. I would try not to move my head too fast from one side to the other or I would get real dizzy, but I still got dizzy anyways if I turned my head.
A short while later that month, while at work one day, I could tell my body was starting feel numb. My head was fuzzing out, making me feel blank in the head with a numbing sensation across my forehead leading into the rest of my face. Then I felt the rest of my body going with numbing in my limbs. My left arm started twitching, as it had always done when my system got run down. I had learned to cope with the twitching of the left arm for many years, but never knew why it was doing that. I just knew it twitched when I was physically exhausted. Now this numbing sensation with more dizziness was starting to occur.
Shortly into these symptoms starting up I could tell I was going to collapse, so I found a chair and rested the back of my head on the back of the chair slouching in the chair. Then I shut down with my left arm jerking. My co-workers lifted me to another room to lay down. One lady suggested I was having a seizure and I should go to the doctors. So I went as soon as I was able to get up and function properly.
Shortly after arriving at the clinic, while standing at the counter talking to the girl I could tell I was going to collapse again. I told the girl to come around and help me I was going to collapse. She waved me off and told me to just take a chair the will just be a short while. I hugged the counter and told her I was going to collapse again. I couldn't have walked from the counter to the chairs and I knew I was going down. She came around to help me to the chairs by this short moment I could no longer speak, my legs were going numb and I was collapsing. She drapped me on the chairs and then got the doctor. Good grief!
Once they carried me to the room the doctors did a who check over and again they didn't know why I was there, but it was unfolding for them before their eyes. They called an ambulance and took me to the hospital. They had given me something to put me out. The next thing I remember was waking up in emerg at 9:00 pm. By then they had taken a chest x-ray and done a CT SCAN. I was in the hospital for a couple of days.
For there on my journey got more interesting as doctors fuddled their way through. I will continue this in part III.
A twenty year illness surfaces (this part explains the beginning of this illness)
It was over two years ago (2007) that my health took a turn for the worse, to the point I had to stop working. I had been experiencing most of these symptoms for years periodically, but it hadn't bothered me in a while. I might only have a few episodes a year. I was once hospitalized over ten years ago for a week because my system shut down completely leaving me in a paralyzed state. The doctors never figured it out and I never pursued it after I was better. I just figured it went away. But it didn't go away completely.
Where it all began
When I was in my early twenties I had become extremely ill with flu like symptoms. I had fever, chills, extreme sweating, swollen throat and cold sores. I had never had a cold sore before this time and knew I had gotten it from my boyfriend / future husband. I really didn't know what they were. I thought they were just pimples. NOT. I was so sick a doctor came to my apartment and gave me antibiotics. One night I was dilirious and sweat right through the house coat, drenching the sheets. My boyfriend rang out the house coat in the bathtub. I am a petite women and really don't sweat noticeably, only if I workout really hard I might get some small beads of sweat on my nose. So this was very unusual for me. I was off work for three weeks.
It would be after this time that I started getting an unusual symptom. After work I would feel so exhausted and when I laid down to rest my left arm started twitching, flinging my arm across my chest. It wouldn't stop. My husband and I went to emerg. This was so unusual. The doctor ordered a CAT SCAN. When I went to get this done the technician told me this dye was the least likely to cause an allergy reaction. I wasn't concerned, since they said it was safe.
The minute the dye was injected I felt it hit my head and it felt like it was going to kill me... my head and eyes started to shut down. As quickly as I could, I announced I was going to pass out!! They quickly injected me with medication to stop the reaction. I instantly swelled causing my breathing to become difficult and I felt drowsy all at the same time because of the medicine. Thank goodness they had it ready. My left arm started twitching out when this happened because my body was jolted.
After a short while they aborted the dye plan and just put me into the machine. I don't know if they could even get a great picture without the dye, but they said they could still do it. It apparently showed nothing.
I was later sent to a neurologist. He was an impatient man and had an air about him I didn't like. He turned my head and I was dizzy both ways. He brushed me off as it was only stress. I couldn't imagine what I would have been stressed about. I was newly married and a happy girl. I knew this was an unusual symptom and knew it wasn't from stress. So I didn't pursue it any further. I had lost confidence in the doctors. I wasn't one to go to the doctors to complain anyways and I wasn't hurting anywhere so I left it. My left arm for many years would still twitch out if I over exerted myself. It never twitched out if I was emotionally stressed.
I was always an active person and physically fit. I liked to do a lot of things and just did it. But then after I had my two children I began to collapse at home. I could always feel it coming on so I would go to the couch and lay down. The first time it happened my whole body shut down causing my body to be in paralyzed state. I was coherent and could feel my body. My eyes were fixed only enabling me to blink slowly. My left arm would twitch out and that was it. This lasted for about a half hour and then I slowly came out of it and felt very slow. There was no pain so I never went to the doctors.
This would happen periodically over the next few years. Until finally I was having more episodes like this and they were happening more often. Then one day after I had an episode my friend suggested I go to the doctors. I realized then that something was going wrong and I should find out. When I walked into the doctor's office I was standing at the desk and then I collapsed. They didn't know why I had come in. But there I was on the floor jerking and paralyzed. Again I could hear and feel everything and my eyes were fixed only blinking slowly.
I was sent to the next city closest that could do more testing. I was there for a week. They did an eeg and some blood work, but nothing too extensive. I was coming in and out of this state of paralysis for the next week. One night it was at the point my breathing had shallowed down to the point it even stopped. I was paralyzed I couldn't hit the buzzer for the nurse... I couldn't take that breath and I was scared! It went as far as it could go and then my breathing came back. What was that all about now? This was new. This happened several times that night. This was now concerning me that this could turn seriously life threatening.
In the end the doctors couldn't figure this out and just called it stress. I was so appalled at their lack of investigation. When doctors don't know what's wrong they call it stress. I have discovered doctors learn the basics and then study whatever they want from the point of their graduation. It's their choice if they want to learn more.
That was the worse time I had with the collapsing and then it pittered out. There was no rhyme or reason. I didn't let it consume me. I just carried on as before. I was a stay home mom raising my children so I had no worries. If I didn't feel well I just simply laid down so it would escalate to the point of collapsing me.
When we moved out to the country and started to have a little hobby farm with chickens, etc., there was work to be done. Some mornings when I would go out to the pond to pick up buckets of water, early morning, and I would feel suddenly sick to my stomach feeling instantly drained. I knew I was going to collapse, so I charged to the house and on the way I was already shutting down. I couldn't speak and my body was going numb, then I would flop on the bed jerking about. This would last about an hour. After I came out of it, I was very slow with my speech and movements after. Every single time I've collapsed I was coherent and could feel everything. My body felt like it was in a deep sleep and there was nothing I could do to wake it up.
Several years later... (I was now working full-time providing for myself as a single mom)
2007
Since being in a fulltime position at work I had been feeling out of sorts for several months and noticed my memory was glitching way too much, so I went to the doctors to find out if cortisol levels were out or my hormones. My thyroid had been out for a few years and was taking .25mg of synthroid which helped through that time. After work I would go home completely exhausted and run down so I didn't do much, just rested. My blood work didn't show anything unusual.
By the next month I had been getting a lot of vertigo and just took tylenol to try and curb this headache dizzy feeling. It was hard at work becuase you have to move quickly and be on the ball. This dizziness was slowing me down and frustrating my co-workers. I would try not to move my head too fast from one side to the other or I would get real dizzy, but I still got dizzy anyways if I turned my head.
A short while later that month, while at work one day, I could tell my body was starting feel numb. My head was fuzzing out, making me feel blank in the head with a numbing sensation across my forehead leading into the rest of my face. Then I felt the rest of my body going with numbing in my limbs. My left arm started twitching, as it had always done when my system got run down. I had learned to cope with the twitching of the left arm for many years, but never knew why it was doing that. I just knew it twitched when I was physically exhausted. Now this numbing sensation with more dizziness was starting to occur.
Shortly into these symptoms starting up I could tell I was going to collapse, so I found a chair and rested the back of my head on the back of the chair slouching in the chair. Then I shut down with my left arm jerking. My co-workers lifted me to another room to lay down. One lady suggested I was having a seizure and I should go to the doctors. So I went as soon as I was able to get up and function properly.
Shortly after arriving at the clinic, while standing at the counter talking to the girl I could tell I was going to collapse again. I told the girl to come around and help me I was going to collapse. She waved me off and told me to just take a chair the will just be a short while. I hugged the counter and told her I was going to collapse again. I couldn't have walked from the counter to the chairs and I knew I was going down. She came around to help me to the chairs by this short moment I could no longer speak, my legs were going numb and I was collapsing. She drapped me on the chairs and then got the doctor. Good grief!
Once they carried me to the room the doctors did a who check over and again they didn't know why I was there, but it was unfolding for them before their eyes. They called an ambulance and took me to the hospital. They had given me something to put me out. The next thing I remember was waking up in emerg at 9:00 pm. By then they had taken a chest x-ray and done a CT SCAN. I was in the hospital for a couple of days.
For there on my journey got more interesting as doctors fuddled their way through. I will continue this in part III.
Saturday, April 24, 2010
Not well today.
I woke about 5 am. I was going to start writing on my computer while I was still in bed, but the one laptop computer I have the curser kept jumping around and it was frustrating me. So I decided to get up and go to my office to use this computer.
Yesterday evening I did a bit of weeding and planted a couple of new bushes to fix up the front yard. I could tell my system was wiping out and that I would pay for it later. Yip! This is later and I can feel my whole spine from my neck to my lower back enflamed. When I got up my feet hurt... this is just one of those things that happens. Then when I get up out of bed I walk like a little old lady, which I'm not. I'm feeling a bit sick to my stomach now, so I must stop and go back to bed.
My blog will take some time for me to explore and set up. Keep checking back. It will take off I promise!
Yesterday evening I did a bit of weeding and planted a couple of new bushes to fix up the front yard. I could tell my system was wiping out and that I would pay for it later. Yip! This is later and I can feel my whole spine from my neck to my lower back enflamed. When I got up my feet hurt... this is just one of those things that happens. Then when I get up out of bed I walk like a little old lady, which I'm not. I'm feeling a bit sick to my stomach now, so I must stop and go back to bed.
My blog will take some time for me to explore and set up. Keep checking back. It will take off I promise!
My Introduction
I woke this morning too early. It's still dark out. My cats were happily curled up against me. My little toy poodle was on the floor this time. She was clearly jealous of the cats being with me instead of her. Poor baby, but they must take turns. My window was open and there was a nice gentle breeze blowing in fresh air. I could hear the rustling of the trees as the wind was blowing. Southern Alberta gets a lot of wind. I usually don't mind as I'm in door much of the time.
This is my first blog. I've never had one or ever thought to have one. As I was laying here in bed many thoughts were rushing though my mind. I was reflecting on my medical journey. I've gotten to a point that I don't look at the losses and disappointments that I've had over the last couple of years the same. It's been a medical journey filling me with good information. Unfortunately it's been at my expense, from my health and finances to my social life.
My inspiration for writing this blog has come as a result of the injustice, ignorance, lack of knowledge and loss, that the medical society bestows upon its patients, the insurance company rides upon its clients and the difficulties people with illnesses have had to endure. This blog will undoubtedly offer information to both the medical society and the person battling through their illness. These are my recollections...
My inspiration for writing this blog has come as a result of the injustice, ignorance, lack of knowledge and loss, that the medical society bestows upon its patients, the insurance company rides upon its clients and the difficulties people with illnesses have had to endure. This blog will undoubtedly offer information to both the medical society and the person battling through their illness. These are my recollections...
Over two years ago I had to go on to disability because my health was wiping me out due to collapsing.
(I must stop here. I've been up for a while now checking out how to work this blog and now I am very wiped out. Stay posted I will be adding all the information and regular posts everyday if possible.)
(I must stop here. I've been up for a while now checking out how to work this blog and now I am very wiped out. Stay posted I will be adding all the information and regular posts everyday if possible.)
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