Thanks to all and an update on my wife

1…6791112…54

Comments

  • paysonites
    paysonites The Rim Country Posts: 1,150
    Well it's around 5:00am and I am unable to sleep. After getting only an hour sleep the night before I'm not sure where this nervous energy is coming from. Life is getting more and more difficult. Shawna's PCP (family doctor) dropped her last week. We found out through another doctor that she said she is tired of taking care of her. This week is the last week of her IV antibiotics and then that part of our lives is done. We were told by her Cardiologist that she will not be able to get new hardware in her back until the vegetation (growth) is gone from her heart. It was 3 1/2 inches long and has shrank down to around and 1 1/2 inches long. Unfortunately since her PCP went against my wife's infectious disease control doctors orders and put her on half the antibiotic dose than what she recommended the vegetation might not go away completely. Which means Shawna might have to live with two discs missing in her back for quite some time if not forever. We are not sure at this point. All I do know is my wife is constantly at a pain level of an 8 on a scale of 1-10. As you can imagine this has torn our lives apart. I can't bare the thought of her having to suffer like this for a longer period of time. My God she is only 28 years old. Things have got to get better here and they will eventually. Since I am only able to work 15 hours a week so I can take care of her, life is getting more and more difficult. I need to find my way again. These times are getting so tough. Please send some positive thoughts our way. After I get some rest, I'll have the strength again to endure whatever comes our way. I wish that I could start reaching out to family but I have just been to withdrawn from everything. I am completely engulfed in what we are going through together. We're both so devastated by the news. Again, please send positive thoughts our way. Thanks again for all of the emotional support.

    John
    John and Shawna
  • chime
    chime Posts: 7,839
    One of the causes supported by the Wishlist Foundation which may be able to assist you.

    http://www.advocacyforpatients.org/

    Postive vibes sent your way.
    So are we strangers now? Like rock and roll and the radio?
  • dimitrispearljam
    dimitrispearljam Posts: 139,725
    buddy,get some rest..need to sleep a bit..
    all will be ok...
    "...Dimitri...He talks to me...'.."The Ghost of Greece..".
    "..That's One Happy Fuckin Ghost.."
    “..That came up on the Pillow Case...This is for the Greek, With Our Apologies.....”
  • paysonites
    paysonites The Rim Country Posts: 1,150
    dimitrispearljam wrote:
    buddy,get some rest..need to sleep a bit..
    all will be ok...

    Thank you
    John and Shawna
  • drinkbigredinstead
    drinkbigredinstead Posts: 2,240
    Sending well wishes and positive thought your way.
  • StillHere
    StillHere Posts: 7,795
    Do contact Wishlist John..we would all love to help

    Sleep is difficult but you need it..and Shawna needs you to be rested for her as well

    One day soon you will have time for yourself as well ... and that will be a good day coming

    remember the old saying: its always darkest before the dawn

    believe that all will be well

    check your PMs :)

    Hugs and more hugs
    peace,
    jo

    http://www.Etsy.com/Shop/SimpleEarthCreations
    "How I choose to feel is how I am." ~ EV/MMc
    "Some people hear their own inner voices with great clearness and they live by what they hear. Such people become crazy, or they become legends." ~ One Stab ~
  • drinkbigredinstead
    drinkbigredinstead Posts: 2,240
    Thought and prayers from Texas. Keep fighting.
  • mfc2006
    mfc2006 HTOWN Posts: 37,491
    drinkbigredinstead wrote:
    Thought and prayers from Texas. Keep fighting.

    exactly what i was going to say. bump!
    I LOVE MUSIC.
    www.cluthelee.com
    www.cluthe.com
  • EmBleve
    EmBleve Posts: 3,019
    More positive thoughts sent to you both. Hugs.
  • paysonites
    paysonites The Rim Country Posts: 1,150
    Hello everybody,

    Thank you so much for your love and support. I have been wanting to get on here and do some updates but I just haven't had the time. The phones have been ringing off the hook with doctors and case managers. Plus I am trying desperately to get to work. So I'll be checking back here later tonight. It's our son Dorian's birthday today and we haven't even figured it all out yet so it's going to be a long day. Again, Thank you so much I/we wouldn't be able to make it through without the support of everybody here. Thank you, Thank you, Thank you.

    John and Shawna.
    John and Shawna
  • redrock
    redrock Posts: 18,341
    Happy birthday to Dorian!
  • mfc2006
    mfc2006 HTOWN Posts: 37,491
    redrock wrote:
    Happy birthday to Dorian!

    Hope he has a great one! :D
    I LOVE MUSIC.
    www.cluthelee.com
    www.cluthe.com
  • MattCam420
    MattCam420 Posts: 183
    Sending some positive thoughts your way!

    Oh, and Happy Birthday to your little man. :D
    "Music is the last true voice of the human spirit. It can go beyond language, beyond age, and beyond color straight to the mind and heart of all people." - Ben Harper
  • StillHere
    StillHere Posts: 7,795
    Happy Birthday Dorian!
    peace,
    jo

    http://www.Etsy.com/Shop/SimpleEarthCreations
    "How I choose to feel is how I am." ~ EV/MMc
    "Some people hear their own inner voices with great clearness and they live by what they hear. Such people become crazy, or they become legends." ~ One Stab ~
  • F Me In The Brain
    F Me In The Brain this knows everybody from other commets Posts: 31,835
    Happy Birthday Dorian!

    cool-birthday-candle-hq.jpg
    The love he receives is the love that is saved
  • paysonites
    paysonites The Rim Country Posts: 1,150
    Good evening,

    I finally found some time to get on here. We had to switch primary care doctors. Shawna's new doctor is very energetic, knowledgeable and very interested in helping us through this next chapter so to speak. Shawna's Cardiologist is having her continue blood thinners until this vegetation/growth in her heart shrinks enough for her heart rate to become regular again. He told us that it needs to before Shawna can have her back surgery. He's going to check her heart in a little over a week again but he stressed that this could take possibly up to a year. The pain is still extreme so we've got a lot to figure out. :D Some good news :D ...... her pick line was removed today. Woo Hoo!!! We're home now after a trip to the E.R. hours later after she had a pretty serious allergic reaction. We think it was residual IV medicine that leaked out upon removal of the pick line that caused the reaction. She was really irritated because we were trying to celebrate the pick line being removed and here she ends up in the E.R. again. I guess her body was giving her one last hora. I'm sure it's going to feel really good tomorrow. Just thought I'd check in and say hi. Again we want to thank everybody for all of the warm thoughts and supportive comments. Please continue them since this road is going to be a long one.

    John and Shawna. :):)
    John and Shawna
  • dimitrispearljam
    dimitrispearljam Posts: 139,725
    one step per day John....
    all will be ok..
    "...Dimitri...He talks to me...'.."The Ghost of Greece..".
    "..That's One Happy Fuckin Ghost.."
    “..That came up on the Pillow Case...This is for the Greek, With Our Apologies.....”
  • StillHere
    StillHere Posts: 7,795
    phewww what a roller coaster ride you guys are on
    great to hear some cheerful news from the camp!
    keep on keepin' on :D
    peace,
    jo

    http://www.Etsy.com/Shop/SimpleEarthCreations
    "How I choose to feel is how I am." ~ EV/MMc
    "Some people hear their own inner voices with great clearness and they live by what they hear. Such people become crazy, or they become legends." ~ One Stab ~
  • mcgavinj
    mcgavinj Idaho Falls, ID, USA Posts: 311
    Good luck man. One thing I've learned is we all defintely have our trials. My thoughts and prayers with you for sure. Peace and Love to you and your family.
  • paysonites
    paysonites The Rim Country Posts: 1,150
    Our son Dorian got the biggest kick
    out of all of the Birthday Wishes on here.
    He really liked what he called the exploding cake.
    Thank you so much everybody. :D:D:D:D
    John and Shawna

Categories