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KathyBair

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Blog Entries posted by KathyBair

  1. KathyBair

    Hello Everybody

    By KathyBair,

    This is my first blog here. I usually post on myspace but I think this is a more appropriate place to post how I am feeling and what's going on with my doctors.
     
    I didn't sleep again last night which is not unusual for me. I went to the neurologist and am up another three pounds since my primary weighed me last week. Today I go in for my first test for Cushing's and some fasting bloodwork. Since I usually only eat at night this was hard for me. I am really nauseous and can't wait for it to be over with. I know better than to think there will be any answers in there but hell, I can try.
     
    The neurologist finally set me up with a speech therapist. Only took him seven months. I don't know what he thinks that will do since my speech symptoms change from bad to worse every day and I can't predict how I will be from one minute to the next. But hell, I'll see what they have to offer. At least now people are starting to take me seriously. I guess he had to see it for himself in order to believe what I was telling him. I think it helped showing him a picture of what I looked like before I got sick. Idk.
     
    I go for a video EEG tomorrow. They still keep saying seizure disorder. I think they are full of it. I hope while I'm in there they will do more testing. I am too sick for this to be just a seizure disorder. And I've never weighed this much even when I was pregnant.
     
    I am sorry if this is hard to follow as my thoughts are all over the place this morning.
  2. KathyBair

    Surprise!

    By KathyBair,

    April 29th, 2008
     
     
    Well I went to sleep around 10:30 AM and woke up around 4PM. I woke up talking fine but boy am I in pain. The back of my neck hurts and my left hip - every time I step on that leg I see stars. And my left shoulder hurts and I have a slight headache like pressure behind my neck.
     
    The good news is I am finally speaking fine and I actually have a some energy. I don't know how long it will last. I usually only get a couple of hours.
     
    I have to pack for my video EEG. I am not looking forward to this. Maybe we'll finally clear up this seizure mystery once and for all.
     
    I took my first blood test for Cushing's at 8 AM today.
     
    Still waiting onan answer from Social Security.
     
    I am in a real crabby mood which is not unusual after coming out of a speech episode if that is what you call it. Idk really what it is but it is weird. More often that not I am talking funny. I can hear it in my mind just fine but when I go to say it it's either slurred or gibberish. Like my mouth isn't listening to my brain. Weird.
  3. KathyBair

    speech

    By KathyBair,

    That didn't last long. It is now 6:16 and my speech is slurred again. I got really tired out of the blue and my speech started slurring. That's the way it usually works. I knew it was coming I could feel it.
     
    I am so damned sore. I feel like I've been hit by a truck. My feet feel as though if I step down too hard they would break at the ankles.
     
    Don't mind me I am just keeping a log in case I need it to help with a diagnosis.
  4. KathyBair
    I maybe dozed off for an hour last night and was woken up by the pain in my feet and my left hip. I don't know why doctors don't acknowledge that I am in pain. I stayed up the rest of the night watching tv and eating just like every other night. I had a hell of an appetite last night.
     
    This morning the only things I can speak come out as total gibberish. I really hate this. I pray that they find an answer soon.
     
    I go into the hospital today. I hope this isn't a waste of time.
  5. KathyBair

    Damned hospital

    By KathyBair,

    I slept from 8AM to 2PM today. I am still very sore and can't talk again.
     
    The hospital called and said they don't have a bed ready again. So I have to wait. This was set up months ago. I did my part. So much for hope. I don't think I really need a video EEG but this could have been an outlet for further testing. Idk.
     
    Everything's a struggle anymore.
  6. KathyBair

    fatigue

    By KathyBair,

    I had an unevntful day and not as sore but my speech is still out. I didn't do much today. Cooked dinner and did dishes and played on the computer. I was so exhausted all day. I felt like something was sucking all the energy out of me.
     
    I hope the hospital has an open bed for me tomorrow.
     
    Sometimes I question is this all in my mind? Is it mental illness? Am I getting fatter because I am lazy? I didn't think mental illness could physically hurt so bad. Maybe it's my fault in some way.
     
    Mind mind is starting to stray. I'll update again tomorrow.
     
    I am in an ok mood tonight.
  7. KathyBair
    Well I was up all night as usual and I'm about to go to sleep. Idk yet if the hospital has a bed available today. Everything is hurry up and wait.
     
    I still can't speak and feel a little dizzy and I have a litle bit of chest pain. I took an aspirin. I hope that does the trick. I am not as sore yet this morning and am in a calm mood.
     
    I'll update again later.
     
    I wish everyone has a great day. I know with us they are few aand far between.
  8. KathyBair

    Stroke?

    By KathyBair,

    Well they found me a bed yesterday afternoon. I actually slept last nigh and had about a half an hour of plain speech before I couldn't talk right again.
     
    Well, the EEG technician came in and spoke with me. He did not see any evidence of a seizure but tonight we are not going to be taking the Tegretol and see if it comes out different.
     
    He had an idea of what it could be. He said you can have a stroke so small it doesn't get detected on an MRI but if it hits the right area of the brain can cause major damage or you can have a big one that don't cause as much damage and is easy to detect. So the theory at the moment is stroke. He also said speech therapy will do me good. I may be able to retrain my brain to speak.
     
    He was very friendly and informative.
     
    I am still pushing my doctor for more tests.
     
    That's all I know for now.
  9. KathyBair

    update

    By KathyBair,

    Well the 5 days in the hospital was pure hell and I don't think the video EEG will answer anything. I am glad to be out. I am in the process of doing my first UFC. Maybe I'll finally get some answers. My PCP says I've got the highest cholesterol levels he's ever seen. That and the high blood pressure and low creatine and they are still trying to tell me it is psychological. Go figure.
  10. KathyBair

    Bloodwork

    By KathyBair,

    I got my test results back from the one doctor. I have a 362 cholesterol level. Not much else showed - low sodium, high platelets, high WBC, High RDW, and low MPV. From what I understand some of this is caused by the Tegretol. I think they are taking me off of it soon. I'll know more after we go over the EEG.
  11. KathyBair
    Three days Grace - Never Too Late
     
     
    This world will never be
    What I expected
    And if I don't belong
    Who would have guessed it
     
    I will not leave alone
    Everything that I own
    To make you feel like it's not too late
    It's never too late
     
    Even if I say
    It'll be alright
    Still I hear you say
    You want to end your life
    Now and again we try
    To just stay alive
     
    Maybe we'll turn it around
    'Cause it's not too late
    It's never too late
     
    No one will ever see
    This side reflected
    And if there's something wrong
    Who would have guessed it
    And I have left alone
    Everything that I own
    To make you feel like
    It's not too late
    It's never too late
     
    Even if I say
    It'll be alright
    Still I hear you say
    You want to end your life
    Now and again we try
    To just stay alive
    Maybe we'll turn it around
    'Cause it's not too late
    It's never too late
     
    The world we knew
    Won't come back
    The time we've lost
    Can't get back
    The life we had
    Won't be ours again
     
    This world will never be
    What I expected
    And if I don't belong
     
    Even if I say
    It'll be alright
    Still I hear you say
    You want to end your life
    Now and again we try
    To just stay alive
    Maybe we'll turn it around
    'Cause it's not too late
    It's never too late
     
    Maybe we'll turn it around
    'Cause it's not too late
    It's never too late (It's never too late)
    It's not too late
    It's never too late
  12. KathyBair

    Just an update

    By KathyBair,

    I put up some recent pics of my beautiful grandson, Tyler on my Myspace if anyone wants to see. He is getting so big. He is almost 9 months old now.
     
    As for me, I can't say much other than I have been feeling pretty rough lately. The speech problems and the pain is the worst of it although the weight gain is taking a toll on my self esteem. I gained another 5 pounds this week.
     
    Not much I can do except keep pushing the doctors for answers and finding another neurologist and endocrinologist for a second opinion.
     
    I know I have mental problems but there is a physical cause and I won't stop until they find it. Their psychiatric drugs make no difference. I still continue to get worse. Except for the Cymbalta helps me deal with it a little better.
     
    I've been through a lot of rough times and always tried to push forward. Since this illness started, I am so completely helpless. I hope to eventually find a cure and work and drive and love again.
     
    I remember wanting to run off to New York to go get better. Now I am here and a year later I am still looking for answers. At least I am lucky enough to have insurance though. Eventually they have to find what is wrong with me.
     
    I try to avoid feeling like my life is over but it gets harder and harder to believe otherwise the longer it takes to get an answer.
     
    Monday I go for the dex test for Cushing's disease. This one is really important and if it shows something could prove the doctors wrong about mental illness causing my problems. I am praying really hard for suggestive results on this one.
     
    I will stop every medicine I am on for three days before so there is no interference on this test. The doctors didn't tell me to but I know better. I did that on the last one too and got a relatively high number. I just don't want the doctors to turn around and say it was my medications causing the high results. With no medications there is no excuse for them to say that. But they still like saying stress.
     
    Social Security is taking so long. Sometimes I think this waiting is never going to end. The state help should come in in the next two weeks hopefully. I've been over two months without an income now. I owe Mom a bunch of money at this point. She's not worried about it but I am.
     
    I am glad to not be seeing anyone right now. I don't need the stress of trying to please someone who keeps getting angry at me and embarrassed of me for things I cannot help right now. It's much more peaceful being alone.I can focus on what I need to do for me. The biggest drawbacks are lonliness and boredom but that's not as bad as being in a relationship.
     
    I am rambling but I have a lot going on and really can't express it other than in writing.
     
    I am in a pretty good mood tonight.
     
    I hope everyone had a great day.

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