hearts and thoughts john
if all of our collective good thoughts and vibrations have anything to do with it...all will be well
remember...and i know you do....do NOT back down
do what you think is right
many people feel that doctors know all...that they are human gods
but take it from me, that is not the case
doctors and nurses are people just like you and me with distractions and problems of their own
the majority do the best they can, but its easier to just throw your hands in the air sometimes
a case like shawna's can be overwhelming for the primary physician
seek other opinions if you are unhappy ...or talk to him or her about taking on a partner doctor
in any case keep up the good fight john
shawna is in my thoughts
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 ~
Nothing but love, thoughts, and prayers going your way Shawna and John.
Stay strong and keep fighting.
Bristow, VA - 5.13.10
East Troy, WI - 9.3.11
East Troy, WI - 9.4.11
Atlanta, GA - 9.22.12
Las Vegas, NV - 10.31.12 (EV)
Las Vegas, NV - 11.1.12 (EV)
Chicago, IL - 7.19.13
Dallas, TX - 11.15.13
Oklahoma City, OK - 11.16.13
Seattle, WA - 12.6.13
Lincoln, NE - 10.9.14
Moline, IL - 10.17.14
St. Paul, MN - 10.19.14
Milwaukee, WI - 10.20.14
New York, NY - 5.1.16
New York, NY - 5.2.16
Boston, MA - 8.5.16
Boston, MA - 8.7.16
Chicago, IL - 8.20.16
It's another day John
How's it going?
Sending out a new batch of warm vibes freshly baked for you guys just this morning
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 ~
Thank you everybody for your support. It's been a roller coaster here for the past few day's and our internet has been crashing periodically. Our cable company is coming out today to fix it and I'll be able to do an update later.
Please keep us in your thoughts especially today...Thanks
Thank you everybody for your support. It's been a roller coaster here for the past few day's and our internet has been crashing periodically. Our cable company is coming out today to fix it and I'll be able to do an update later.
Please keep us in your thoughts especially today...Thanks
John and Shawna....
as every day
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 ~
We've been experiencing some pretty rough waters lately. Shawna's pain is now in both legs. She's having sharp,dull pains, numbness and extreme spasms at times. A new symptom is numbness in her hands which has been going on for about 11 day's now. We are having problems with the doctors understanding the situation and have had to make a defensive stand. I am to exhausted to explain. All I can say right now is they are trying to force her into a care center. Which isn't going to happen. We were told by a nurse that works there that thank GOD your not coming here because there is a extreme outbreak of staff and mersa infections. She has had three major internal infections in the past months so why would they want to put her in such a high risk environment. I am documenting and writing a letter to her PCP of concerns of patient confidentiality breaches and mistreatment issues. Please keep us in your thoughts for these times are very difficult.
So sorry to hear this John :( The healthcare system is broken and horribly tough to navigate. Not sure what your benefits are like, but some employers offer access to patient advocacy programs. Also, does Shawna have a case manager? I think sometimes case managers are assigned too but I'm not sure in what situations.
All I can do is pray these day's.Which is easier said than done. Life has really been tough. More and more it becomes difficult. We know that it will get better here soon. Keeping up or ahead of this fight is the key to making it through it all and hopefully not being to tarnished in the end. Positivity will be the key to any great stride of success. You can NEVER second guess your guts instinct. Run with the thought that life will one day get back to it's post semi original form. Love will and does conquer all.... Dignity will rise up against all odds to make way for the new path. Which even though is welcomely faded, promises and aspires strength if given the chance. The chance to open up the doors that have been sealed from all the non understanding ideals that just never did make it. To finally let things heal. The chance to reconnect with the dreams that started in the beginning and have been the main foundation, drive and light that did and continues to help push and shove us through these times of trouble. Even though one may be beaten down from there best. The best day's are coming. One day at a time until these hardened day's are just memories that will be pressed to be forgotten but yearned to be turned into new strength. Strength for this journey. From journeys will come new found strength. The will is there and we will overcome this and find our way. For their are no boundaries when it comes to love. Love is the center and from that center comes everything else.
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.
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.....”
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 ~
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.
"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
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 ~
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F Me In The Brain
this knows everybody from other commets Posts: 30,651
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. Some good news ...... 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.
"...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.....”
phewww what a roller coaster ride you guys are on
great to hear some cheerful news from the camp!
keep on keepin' on
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 ~
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.
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.
Comments
Susan
if all of our collective good thoughts and vibrations have anything to do with it...all will be well
remember...and i know you do....do NOT back down
do what you think is right
many people feel that doctors know all...that they are human gods
but take it from me, that is not the case
doctors and nurses are people just like you and me with distractions and problems of their own
the majority do the best they can, but its easier to just throw your hands in the air sometimes
a case like shawna's can be overwhelming for the primary physician
seek other opinions if you are unhappy ...or talk to him or her about taking on a partner doctor
in any case keep up the good fight john
shawna is in my thoughts
hugs
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 ~
Stay strong and keep fighting.
East Troy, WI - 9.3.11
East Troy, WI - 9.4.11
Atlanta, GA - 9.22.12
Las Vegas, NV - 10.31.12 (EV)
Las Vegas, NV - 11.1.12 (EV)
Chicago, IL - 7.19.13
Dallas, TX - 11.15.13
Oklahoma City, OK - 11.16.13
Seattle, WA - 12.6.13
Lincoln, NE - 10.9.14
Moline, IL - 10.17.14
St. Paul, MN - 10.19.14
Milwaukee, WI - 10.20.14
New York, NY - 5.1.16
New York, NY - 5.2.16
Boston, MA - 8.5.16
Boston, MA - 8.7.16
Chicago, IL - 8.20.16
How's it going?
Sending out a new batch of warm vibes freshly baked for you guys just this morning
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 ~
Please keep us in your thoughts especially today...Thanks
John and Shawna....
as every day
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 ~
xx
John
http://www.advocacyforpatients.org/
Postive vibes sent your way.
all will be ok...
"..That's One Happy Fuckin Ghost.."
“..That came up on the Pillow Case...This is for the Greek, With Our Apologies.....”
Thank you
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
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 ~
exactly what i was going to say. bump!
www.cluthelee.com
www.cluthe.com
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.
Hope he has a great one!
www.cluthelee.com
www.cluthe.com
Oh, and Happy Birthday to your little man.
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 ~
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.
John and Shawna.
all will be ok..
"..That's One Happy Fuckin Ghost.."
“..That came up on the Pillow Case...This is for the Greek, With Our Apologies.....”
great to hear some cheerful news from the camp!
keep on keepin' on
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 ~
out of all of the Birthday Wishes on here.
He really liked what he called the exploding cake.
Thank you so much everybody.