Thursday, April 12, 2007

i have narcolepsy

Yes, it is late.  But I just took a four hour snooze, and am going to go back to bed shortly.  I just want to have a few minutes computer time.

Gosh, so like what's been happening?  We have been up here since Monday morning and John was hospitalized as soon as a bed became available.  He had actually been having fevers since the Friday before Easter.  He woke up with 101.5 if I remember correctly.  I didn't write about it in my journal.  I thought it was a little flu bug or something, and would go away, and why trouble anyone's Easter.

Anyway, it won't go away.  John runs around 101 degrees.  He has since Friday.  This is starting to get worrisome.  The doctors thought it was an infected PICC Line, but now they can't find an infction in the line.  They did pull the line because it wasn't working, but when they cultured it it didn't show infection.  So now they have no idea what the source of infection is.  Or is it is a virus.

John is getting an IV antibiotic every other day.  Not every day because he only has 25 percent kidney function and his creatinin level is too high.  Too much of the antibiotic could cause him real kidney failure and he would have to start permanent dialysis, so they are walking a tightrope between curing whatever is causing the fevers and keeping his kidneys functioning well.

Well, that's the situation with him.  We don't know a whole lot yet.  When we do we will let you know.

Now I guess I will tell you something about me.  I forgot to mention how my sleep test went.  Suffice it to say the actual test was miserable, LOL.  I won't go into why.  It would be long and boring.  Anyway, the test was two parts, to see if I had sleep apnea and/or narcolepsy.  They called me back after about a week.  I have narcolepsy. 

Some people say, "at least you get to take a nap", or something equally as goofy as that!  They don't know what it is like.  Narcolepsy is a very frightening thing to me.  I don't know how it is to other narcoleptics, because I have never met any.  But to me it is frightening and frustrating.  I can't drive.  I fall asleep in a group meeting, and don't know if I have been asleep for thirty seconds or thirty minutes.  I don't know what I have missed.  I also fall asleep (say in my computer chair) and find myself slumped over and paralyzed and unable to move for a minute or two upon waking.  While I know from past experience that I will eventually get unfrozen, I still am somewhat afraid and call out for John.  I also fall asleep often while on IM with friends.  If I ever stop suddenly chatting with you, you will know why, don't worry, I still like you, LOL.

Yesterday I was sitting in the hospital room chair next to John.  I was holding a cup of coke with ice, and no lid.  I fell asleep and dumped my coke all over myself.  I had no change of clothes.  No, narcolepsy is not a fun way to get an extra nap or fifty a day.

At any rate, I am not scheduled to see the neurologist for treatment until April 26.  So I will just hang in for a bit longer. 

Well, I guess I better go.  Hang in there you all, Krissy 


  1. rocketman6854344/12/2007 2:54 AM

    So Sorry to hear about John's high temp.Hope he gets better real soon.You must be real tired having not had much sleep.I hope they can cure your Narclepsy.Good luck for you both and you both are in my prayers now and always

  2. I think with treatment you'll be fine, my BIL has had it for years and holds a full time job and does fine.  I really don't know exactly how they treat it, but it seems to work.  I am praying for you both and for the doctors caring for you too!
    'On Ya' - ma

  3. hugsdoodlewacky4/12/2007 7:26 AM

    (((((((((((((((((((((((((HUGSTOYOU))))))))))))))))))))))))))))I hope and pray John will get His fever down and I pray you will get this Narcolepsy taken care of.Have a nice day.

  4. Oh I do hope they find the answer to Johns problem soon.I have never heard of your complaint before.I think at times this must be waht I have lol!! UI can fall asleep for England anywhere at any time LOL.Please know you are both in my prayers for a well and healthy future.God Is Good.Prayers being said thousandfold.Take care have as good a day as possible.God Bless.
    Astoriasand KATH

  5. Krissy, I am so sorry to hear that John's fever is continuing and you guys are walking the tightrope once again.  It is just like you NOT to mention his fever so as not to "wreck" anyone's Easter.  Honey, we care about both of you!  I love you, Krissy and I always want to know what is going on with you and with John.  

    I don't think Narcolepsy (Sp) is like a "little nap."  I don't think it's a "little" thing at all.  I am very concerned about you.  It must be terrible to just doze off like that and not know how long it happened for or where or when it could happen again.  I am also very sorry the sleep test itself was a bit troublesome.  

    I wish you did not have to wait to the end of April to hear from the Neurologist.  

    And I wish John didn't have these fevers. I am just sorry you guys have hit another bump in the road when you thought things were better.  I am praying for you both.
    Love, merry1621

  6. i hope things take a turn for the better for you  both soon.
    Jenny <><

  7. So you found out that the infection is NOT in the picc line, huh?  I am sooo sorry I didn't call you yesterday.  After I came home from babysitting I feel asleep and didn't wake up.  I was so tired.  I put the phone by my head, though =).  Always, in case you call.  We are going to go see Michael this morning and going to go take care of your apartment.  PROMISE.  I miss you, sweetheart.  Take care of yourself as best as you can and say hello to John for me.  God bless you two!  Love, ytp xox  P.S.  If you want me to list the hunt and/or another subject or do your MMQ or anything else for you just write me an email and let me know!  I would be happy to, m' dear!! xox

  8. I'm so sorry to hear about John's fever and hospitalization.  I'll be praying for him.  I'm sending ya a personal email.

  9. The thing that I like about you is that no matter what happens in your family, or to you, you still manage to sound positive about it.


  10. Praying for both of you Krissy. I can imagine how this must be a scary thing to have. I will be praying they find a tx for you soon.

    God Bless

  11. helmswondermom4/12/2007 10:07 AM

    I'm so sorry you have narcalepsy, and I hope they can get a handle on John's fever soon.

  12. We are here for you friend. Tammy

  13. No...that's a dangerous one, Krissy.   People just don't always understand.   I'm glad you play it safe...don't want you getting hurt!


  14. midwestvintage4/12/2007 10:25 AM

     One of our doctors has narcolepsy.  He will be dictating and just fall asleep.  When he wakes up he starts right up where he left off dictating.  The poor dictating ladies, LOL.  But it is a really problem.  His doesn't happen when he's up walking around but have him sit down, bye bye.  Hope they get you on a good treatment plan and hope they find out why John is having a fever.  Good luck.


  15. I will continue to pray for you both.....


  16. ((((((((Krissy and John))))))))) I am so sorry John is still sick.  I am praying the docs will find out exactly what is wrong and will have appropriate treatment for the problem.  I am also praying the Lord will preserve John's kidney function through this trying time.
    There is nothing the least bit funny about narcolepsy.  It is a scary thing to have.  I am praying the Lord will protect you and that there will be proper treatment that works for you.
    One idea -- if you have not already done so, consider googling for narcolepsy forums.  Browse through several of them to find one that has plenty of experienced people who can answer questions accurately and help you.  This strategy worked well for me with lupus, fibro and now is working for me with the CPAP therapy.
    BTW, I have an idea of how the sleep study was --  I did two nights a few months ago.  Not much real rest occurrs in the sleep lab.  The wires all over -- the straps around the body to hold all the wires lol --- things up the nose, on the throat, etc. -- the various sticky blobs left over lol.
    loving you

  17. Oh Krissy I so hope they find what is causing John's fevers and no  would not think it is fun to have Narcolepsy, sounds very scary... although now I will have a new reason to tease hubby when he falls asleep at the computer,lol...
    I so wish only the best for you and John, so frustrating for you both with all these steps back and forth every day....
    Big hugs and have a beautiful day!
    Linda :)


  18. So much has happened in yours and Johns life.  You both are such an inspiration to me.  I think your narcolepsy can be controlled.  I never even thought of narcolepsy but thought you might have sleep apnea.  Poor John just keeps going through all these tests.  Then more medicines. Then the side affects of those.
    He is such a strong person.  What he has been through is hard for me to even imagine.  I pray for you both always.  You are always on my mind.
                                                         Love and hugs Myke

  19. Krissy hang in there dear, know you are worried about your darling John, hopefully they can key in on this soon and he'll see a drop in his temp and feel better.  Yes you be careful with your sleep disorder dear.  Take care. Arlene (AJ)

  20. I'm curious as to why the actual test was so horrible. My Doctor wanted to have a sleep test on me and I haven't done it.  Believe me, I won't be bored reading it.
    Hope things get better with John.  You two sure have gone through a lot.
    Pam xoxoxox

  21. Best wishes to John on his recovery.
    Sorry to hear you've been diagnosed with narcolepsy, Krissy. That's not easy. Suggest you Google around for patient support groups - you've probably already done that :-)

  22. I swa a documentary on people with narcolepsy, no its not fun.
    I am sorry to hear that . Is there anything they can do for you?
    Still sending prayers for john!

  23. I don't know anything about narcolepsy really.  Except that I think my Dad had it. I hope there are meds that can help you handle it.   I DO a lot of the things that you do. But I think my problem is staying up too late and the meds I take then trying to get through the day. I can't tell you when I am trying to stay awake at 3am to watch a movie and I've dropped my glass of soda or ice water. Or fallen off the couch. Or dropped my crocheting.
    I sure hope that find dthe cause of John's fever soon. How is feeling, in general.  Hope he's not feeling terrible.  We are thinking of you and praying hard.  
    Love you guys.  Hugs, Barb  

  24. tendernoggle4/12/2007 10:54 PM

    Add what you ahve with the fact that youa re probably worn completely out...and yes, I imagine you do fall off to deep sleep easily!
    Hope all goes better tomorrow..still praying for you both.
    love ya,

  25. topazscorpio274/12/2007 11:54 PM

    Hope both you and John feel better soon!  I read somewhere that sleep disorders can be caused by stress and you've had your share lately. Hopefully, you will both be better soon! -Dawn-

  26. princesssaurora4/13/2007 1:17 AM

    Praying for John to heal up fast from whatever is causing the fevers.  Praying for you that the neuro will help.  I know provigil is one of the drugs they recommend, and I know someone that take it for extreme fatigue (not narco) but it seems to help.  Hang in there..... prayers and hugs!!!!

    be well,

  27. I am praying for you and John. I sure hope John's fever goes away. I'm so sorry about your narcolepsy. It doesn't sound like a fun thing to have. I'm so sorry. You two have been through so much. Hugs and love.

  28. How frustrating!!!  Both John's persistant fever and your narcolepsy.  Praying God to sustain you and guide the physicians that they can get to the source of both!!  -  Barbara

  29. kaydeejay54494/14/2007 1:27 AM

    My prayers and love are heading your way - as always.  My grandmother had narcolepsy.  She would fall asleep anytime she sat for more than 10 or 15 minutes.  It used to scare me when I was little but she never let it bother her and we all go used to it.  I'm sure there must be support online.  Good luck in finding information and talking to others with this illness.
    Hugs,  Kathy

  30. The narcolepsy does sound scary especially the being frozen for a time. I will be praying for you. I hope there is somehting that they can do to help you with it.
    Again my prayers are with you and John. I do hope they get the reason for the fever figured out and that it is an easy fix for him.

  31. That is a scary thing to have to live with.    Knowing that you can't drive will at least spare you the anxiety you may have experienced before you were diagnosed.    I drink coffee and also take Straterra which is not a controlled substance for AADD.   It does make me focus on reading or activity and is not a stimulant.    I don't even need to take it regularly as it has no dependency or withdrawl symptoms.    It stays in my bloodstream.    I am not saying you need to drink coffee and be wired up like me, lol .     There is new medication I have read for Narcolepsy that I would think would be like Straterra which has no bad side effects at all.   mark


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