Hi,
I know I have been elusive and Doogie has done and excellent job writing and keeping people up to date. He uses this as therapy I think. What a great writer and man. He has been very busy catching up with work, projects and preparing to go south. His plate is beyond full so I thought I would take over writing now that I am somewhat coherent so he can focus. I appreciate all your kind thoughts and love !!! Back at you all.
Home is a good place to be. I do not do much and feel like sleeping mostly but I am starting to mend. Hip is good from surgery and pain is low, but the rest of me has not caught up yet. Next week we will see what the body decides as Dr.'s want to attempt a new antibiotic. All my strength is needed for this next round. I don't feel like I can handle another bad reaction so I will be judicious. In the meantime the home nurses and PT are taking good care of me in the comforts of sweet home.
The sun is shining here and Nikko(my little furry sister) is laying by my side. One of us has gas. I am not talking........I think it is her. We are both watching the birds and food channel while Dad and Doug deal with a plumbing problem(clog) in the shower. Good thing because I am going on three days and four is my limit to go with out bathing. Amazing how standards can be lowered.
Kitty, Steven and Dadio your food has been great !! I am happy and full. How lucky, especially because every time Doug takes a work break he makes me eat. Is that a hint? Trying to make up for hospital grub. So we are blessed.
I hope this finds you all happy and at peace during this challenging time on the planet with the economy and all the bad news. It helps to remember what is most important..........our family, friends and community. We can lean on each other and offer support and encouragement to those who face difficult times. We are all resilient beings and capable of making it through this "recession". Keep the faith !!!!
Love and Gratitude,
Angela
Saturday, February 28, 2009
Thursday, February 26, 2009
How do you spell 'relief'...?
"A, H, H, H, H".....
We have a dear friend with plenty of medical experience who will be staying with Angela while I'm south. Along with other friends and family we'll have Angela's needs met and I will be able to focus. We have Skype so I will be able to keep my eye on my Angel while knowing she's in good hands.
I love it when things work the way they do... Faith, it's a marvelous thing. Sometimes I just need to get out of my way...
Wednesday, February 25, 2009
'Conundrum' after-thought...
Although there is plenty of circumstance to consider in our lives, compared to what other people deal with on a daily bases, just within the hospital...we are nothing less than fortunate.
Putting my fear, judgment and anger aside, I can see the beauty in our journey - the Love, Compassion, Hope...how lucky we are.
Grasping the fortune within our circumstance has its payoff...day by day.
...isn't that what life is about?
Although there is plenty of circumstance to consider in our lives, compared to what other people deal with on a daily bases, just within the hospital...we are nothing less than fortunate.
Putting my fear, judgment and anger aside, I can see the beauty in our journey - the Love, Compassion, Hope...how lucky we are.
Grasping the fortune within our circumstance has its payoff...day by day.
...isn't that what life is about?
Conundrum:
We're thankful for being able to give Angela a week respite at home away from all the drugs and hospital environment. Reality is, this is only the first quarter of the game...we haven't gotten to 1/2 time yet. The White Coats and the Wolves are at odds with one another in the historic game of life.
Conundrum...
Primary Issue:
Infection, 50% chance the bacterium still remains in her new hip joint, no sign of it now but may still exist. 50% chance it does not. It's a little bug with a serious bite should it latch on to other areas via blood stream.
Concern:
a: could spread to her other hardware which are already compromised and needs replaced.
b: could settle in heart - already compromised with elevated murmur.
Both are high risks - Angela could have serious repercussions if the bacteria is still in her body...no way of knowing for sure. 50%?
Solution: Treat with Antibiotics (anti = against, biotics=a mode of living)
Issue Two:
Angela's body built up anti-bodies to the antibiotics.
Two opposing forces at war, her body the battle ground. It's as if a heated (fever) battle were being fought in an environmentally sensitive area. That area being one which control all the sensitive balances of nature. If any one region is effected, all the others could be effected as well.
Utmost importance: protect, serve and heal her body - her fragile body is doing its best to recover from the stress already incurred.
Possible Solution : Administer new types (2 options) of antibiotics - both are experimental. Daptomycin is next choice, second is unknown to me. The first is naturally found in the soil...perhaps Angela's joy of gardening has a deeper meaning.
Concern:
a: Experimental drugs could be the solution - as Cellcept has been in saving her kidneys in past battles...yea team.
b: Suggested options could have issues - her fragile body may not have what it takes to recover and/or her body reacts to the treatment in a more serious manner than what we recently witnessed.
Issue three:
Will need to start treatment next week. It's a 4-6 week program. Hospital environment not good, she needs to be home. With hip replacement, now the infection, Angela requires constant monitoring and nurturing. In-home nursing can do only so much. They can watch her vitals as the treatment is started. Angel's reaction time could be weeks away - in either direction; a positive reaction or a negative...time will tell.
Concern:
a: Experimental therapy runs amuck.
b: I am unable to provide for her care during this most sensitive time. I have to work out of town to provide for the space and means for her to heal.
c: If we refuse Infectious Disease's choice of course of action (experimental antibiotics) Angela's insurance can drop her...
Conundrum:
a: Do I watch from a distance while others go through the learning curves of how and when to do what while Angela contends to new treatments?
b: Do I give up on making a living out of town and focus solely on creating income from home at risk of loosing our home?
Metaphorical thought:
Is the opposing team actually the 'Wolve (Lupus)-rines' at the U of M and our team actually being the 'hOMe' team?
Possibilities to quire:
U of M Infectious Disease sponsor and support an experimental therapy program using 'Natural antibiotics' [UM study, UC study] found to combat/kill bacteria - what about garlic, sulfur rather than chemicals? Maybe Daptomycin is the golden bullet. It's a shot in the dark.
Solution: Pull the word 'conundrum' out of the dictionary and win the lottery.
Conundrum...
Conundrum...
Primary Issue:
Infection, 50% chance the bacterium still remains in her new hip joint, no sign of it now but may still exist. 50% chance it does not. It's a little bug with a serious bite should it latch on to other areas via blood stream.
Concern:
a: could spread to her other hardware which are already compromised and needs replaced.
b: could settle in heart - already compromised with elevated murmur.
Both are high risks - Angela could have serious repercussions if the bacteria is still in her body...no way of knowing for sure. 50%?
Solution: Treat with Antibiotics (anti = against, biotics=a mode of living)
Issue Two:
Angela's body built up anti-bodies to the antibiotics.
Two opposing forces at war, her body the battle ground. It's as if a heated (fever) battle were being fought in an environmentally sensitive area. That area being one which control all the sensitive balances of nature. If any one region is effected, all the others could be effected as well.
Utmost importance: protect, serve and heal her body - her fragile body is doing its best to recover from the stress already incurred.
Possible Solution : Administer new types (2 options) of antibiotics - both are experimental. Daptomycin is next choice, second is unknown to me. The first is naturally found in the soil...perhaps Angela's joy of gardening has a deeper meaning.
Concern:
a: Experimental drugs could be the solution - as Cellcept has been in saving her kidneys in past battles...yea team.
b: Suggested options could have issues - her fragile body may not have what it takes to recover and/or her body reacts to the treatment in a more serious manner than what we recently witnessed.
Issue three:
Will need to start treatment next week. It's a 4-6 week program. Hospital environment not good, she needs to be home. With hip replacement, now the infection, Angela requires constant monitoring and nurturing. In-home nursing can do only so much. They can watch her vitals as the treatment is started. Angel's reaction time could be weeks away - in either direction; a positive reaction or a negative...time will tell.
Concern:
a: Experimental therapy runs amuck.
b: I am unable to provide for her care during this most sensitive time. I have to work out of town to provide for the space and means for her to heal.
c: If we refuse Infectious Disease's choice of course of action (experimental antibiotics) Angela's insurance can drop her...
Conundrum:
a: Do I watch from a distance while others go through the learning curves of how and when to do what while Angela contends to new treatments?
b: Do I give up on making a living out of town and focus solely on creating income from home at risk of loosing our home?
Metaphorical thought:
Is the opposing team actually the 'Wolve (Lupus)-rines' at the U of M and our team actually being the 'hOMe' team?
Possibilities to quire:
U of M Infectious Disease sponsor and support an experimental therapy program using 'Natural antibiotics' [UM study, UC study] found to combat/kill bacteria - what about garlic, sulfur rather than chemicals? Maybe Daptomycin is the golden bullet. It's a shot in the dark.
Solution: Pull the word 'conundrum' out of the dictionary and win the lottery.
Conundrum...
Tuesday, February 24, 2009
Jail Break!
"Freedom!!!!"My Angel is hOMeward bound!
They're giving Angela a much needed break from all the tender
lovin' care...antibiotics and all. Will monitor from our sanctuary via home nursing visits and follow up test first of the week via her new and improved picc line...(wine not included). All is well in most everyone's eyes, Infectious Disease Dept is reasonably cautious. Will try new, fun and exciting drugs at later date.
In all seriousness, the staff - nursing, house cleaning, to food service to Doctors in diapers and of course our loyal Dr.McCune have all been wonderful, we are grateful beyond words for their care and attention.
Will follow up from the OM front... "What a difference a day makes..."
I'm Drawing Blood...
Next happy go lucky lab tech who flips on the over-head lights at 5:45 a.m. and asks an over-enthusiastic, "How yer doin?" is going to get a syringe in her forehead.
What do you mean, “How yer doin?" Look at the records for gawd sake! - We've been on a 6 day drunk for the past 12 hours, been partying all night wonderin' when someone would come in and flip on the light switch after finally being able to close our eyes for a few mili-seconds.
Now d00gie's flipping a switch because some brain surgeon decides to have a fire alarm drill on the floor above us at 6:42, right when I was about to catch a brief shut eye before the entourage of white coats and clipboards make their rounds with their eager..."How yer doin's"?
Oh wait! Now we just had a new doctor come in asking the award winning question, "With having Lupus, what are your symptoms?" Brilliant!!! Let's have another party while we discuss the volumes of records accumulated in Angela's library of symptoms and her enormous amount of patience with you doctors who are still walking around in diapers!
Good thing is - Angela was able to feed the vampire without a prick, she was able to get up and pee by herself with her feet on the ground and her temperature is well below my current boiling point.
There, got it out of my system. Think I'll close my eyes and envision a most positive way to booby trap the door and light switch for the next beaming "how yer doin?" type individual who dares to enter.
No, second thought...better not...it might be the guy with coffee...where's the IV team when you need them?
(Angela looks good, temp is norm, rash has faded and about ready to eat...wait, is that a Paczki? A 1200 calorie raspberry filled donut and an empty bowl of...yuck...never mind. Angela's doing great! ...everything else seems to be a freakin comedy this morning)
Relief
My sweet sleepy Angel was just carted off to xray to insure her new double barreled picc line was placed correctly. Her fevers have finally subsided and no more poking and prodding for veins - now easy access for anything they need to put in or take out. She had a look of relief as soon as the line was inserted.
She looks like she has a sunburned face from today's excitement but with a day of rest on the early horizon she'll be back to her calm. All is well...no worries...made it through the storm.
We're putting a Do Not Disturb the Disturbed sign on the door upon her return.
She looks like she has a sunburned face from today's excitement but with a day of rest on the early horizon she'll be back to her calm. All is well...no worries...made it through the storm.
We're putting a Do Not Disturb the Disturbed sign on the door upon her return.
Monday, February 23, 2009
Spiking temps, leg/knee pain constant at this point, way-too prominent butterfly rash. Dosed with Oxycodone and Dialauded she's still coherent and manages to say how grateful and positive she is from everyone's concern and support. She's getting ready to get a new pic line so not to have to go through anymore IV's. Spirits are up, care is premium and a new day is around the corner.
Through this hospital stay we've been listening to "Lamentation" by an artist named Tunde
Jegede, over and over...it's been a blessing. I'm sharing this only because the music is calming, more so than the drugs - for Angela, for me and for those who enter our space. Isn't music supposed to sooth the savage beast? Lupus has surely raised it's head with a howl this go around but it continues to retreat with our positive vibrations and Angela and her caretakers kind hearts... the music helps. I recommend it to all...Just a tangent thought while there is a lull...
Can't help but feel we are blessed to have the care we have. The doctor who was on shift when Angela nose-dived called from his home - his night off, checking in to see how she's doing. The sounds people make on this floor at night are discomforting, I walk down the hall with my blinders on only to look forward and out of respect to those who are suffering. Our door is shut to our private room, the music is on with lights dimmed and a trust in the air that all will be well...for us...and knowing there is always something to be grateful for.
Rounding the turn...pic line should be on its way.
Through this hospital stay we've been listening to "Lamentation" by an artist named Tunde
Jegede, over and over...it's been a blessing. I'm sharing this only because the music is calming, more so than the drugs - for Angela, for me and for those who enter our space. Isn't music supposed to sooth the savage beast? Lupus has surely raised it's head with a howl this go around but it continues to retreat with our positive vibrations and Angela and her caretakers kind hearts... the music helps. I recommend it to all...Just a tangent thought while there is a lull...Can't help but feel we are blessed to have the care we have. The doctor who was on shift when Angela nose-dived called from his home - his night off, checking in to see how she's doing. The sounds people make on this floor at night are discomforting, I walk down the hall with my blinders on only to look forward and out of respect to those who are suffering. Our door is shut to our private room, the music is on with lights dimmed and a trust in the air that all will be well...for us...and knowing there is always something to be grateful for.
Rounding the turn...pic line should be on its way.
...not having fun right now
Wish I had better news...she was doing so well...
They tried the antibiotics again...downward spiral. Body rejecting them, overwhelming her pain threshold and nervous system, temp spiking. She refuses anymore antibiotics and drugs other than for pain, had them pull the IV out. No more tests, experiments, blood draws or infusions...for now. Ready to go home...need sane healing environment.
Gut feeling: Infectious Disease dept overly aggressive with antibiotics to fight a bacterial culture that showed up in surgical specimens and not in any of the following blood samples. Waldo is not here. Time for Angela to go home...enough.
Here through the eve...will update...
They tried the antibiotics again...downward spiral. Body rejecting them, overwhelming her pain threshold and nervous system, temp spiking. She refuses anymore antibiotics and drugs other than for pain, had them pull the IV out. No more tests, experiments, blood draws or infusions...for now. Ready to go home...need sane healing environment.
Gut feeling: Infectious Disease dept overly aggressive with antibiotics to fight a bacterial culture that showed up in surgical specimens and not in any of the following blood samples. Waldo is not here. Time for Angela to go home...enough.
Here through the eve...will update...
Sunday, February 22, 2009
Day of Rest
Angela seems to have been sleeping most of the day, hot date last night wore her out.
Good news: The infection is not showing up in any of the numerous cultures taken with the exception of her hip, so the bug is isolated for now. White coats say the fever started due to the infection but it's been determined the fever spikes are due to Angela being allergic to the antibiotics especially the mega doses they infused her with at first to knock out the infection. Her steroid dose will be small, 30mg, out of necessity - no adrenals, plus 'some' steroids will help coax the lupus away rather than carpet bombing the wolfs lair so to speak...ahem...
Angela's body had enough of this roller coaster ride, her arms are dotted with shrinking tapped and scared veins, bruised with punctured vessels from all the blood letting and IV's. Amazingly her hip is healing rapidly and continues to impress even the surgeon with her recovery rate. Now to keep the Lupus at bay.
Looks like my Angel will be able to come home first part of the week so optimism is shining. We'll have to keep her hooked up to the bottle, this one being a pharmaceutical and not chardonnay. The wine still seems a better option.
Saturday, February 21, 2009
Date Night
Wow, a holiday from temperature spikes and skin inflammations, IV's, teams of white coats making their clipboard rounds... happy day. The antibiotics seem to be the culprits, well, more so the Lupus reacting to the antibiotics or... Angela just adding another allergen to her long list of med's she is unable to take. She's had a respite for a few hours from pokes, prods, jabs and needles...what veins she has left sigh a loud relief.
Taking advantage of Angela's steroid buzz we went out on a date touring the hospital on a quiet snowy Saturday night. We were on a covert mission...strategically placing "Create Joy Now" stickers throughout the hospital for people to take, or at least contemplate. It was actually pretty funny. Angela makes a terrible undercover operative. She was afraid we'd get busted - for leaving free stickers on tables, poster boards and at public sitting areas.
I thought it would make a great article, "Gimp Couple Arrested for Spreading a Message of Joy in Hospital".
Taking advantage of Angela's steroid buzz we went out on a date touring the hospital on a quiet snowy Saturday night. We were on a covert mission...strategically placing "Create Joy Now" stickers throughout the hospital for people to take, or at least contemplate. It was actually pretty funny. Angela makes a terrible undercover operative. She was afraid we'd get busted - for leaving free stickers on tables, poster boards and at public sitting areas.
I thought it would make a great article, "Gimp Couple Arrested for Spreading a Message of Joy in Hospital".
Saturday Update...
Hip infection is no longer a priority. Lupus has kicked in... reacting to the infection and to all the antibiotics. In attempt to stop the Lupus in it's tracks - they're dosing her with steroids......................................
Will continue with antibiotics somehow, someway..................................
For lack of expressing how I am truly feeling at the moment:
"Scientists claim that they have achieved landmark success with an experimental approach, using a patient's own stem cells, to fight the life-threatening autoimmune disease lupus. [link]"
Advocate Stem Cell Research.
Focus on the Positive
Keep your Angel Light on...
d;(
Will continue with antibiotics somehow, someway..................................
For lack of expressing how I am truly feeling at the moment:
"Scientists claim that they have achieved landmark success with an experimental approach, using a patient's own stem cells, to fight the life-threatening autoimmune disease lupus. [link]"
Advocate Stem Cell Research.
Focus on the Positive
Keep your Angel Light on...
d;(
It's been another roller coaster day. Gist is, Angela has an infection in her hip, pre-existing as far as the white-coats can tell. Opening her up and stirring up the tissues in or around the failed hip socket etc got the bug excited. It's a fairly weak strain of bacterium, similar to 'acne' but in her case it acts like a zit on steroids...hmmm, wonder how that happened. Her body freaks out trying to rid it like a teen with a pimple on prom night.
To make things more interesting...her body doesn't like the antibiotics. Fevers spike, vitals go nuts, rash and welts break out trying to rid her of the stuff that is trying to get rid of the bug. White coats are perplexed but on it. She may be in here for a while until they can control the infection with something her body won't reject - stop the beastie from spreading to her susceptible joints and high tech hardware.
I have the solution...they won't listen to me though, I'm the one who's willing to sleep in the shower. They gave me a lazy boy for the night, I'm here now gazing at my slightly snoring beauty...guess I skerred 'em. Happy to be here though....at least they could hook me up...geez
Thursday, February 19, 2009
Angel Status:
Up in spirits. Makes a heartfelt connection with all whom enter. Gives blood willingly. Same-O Angela. Her fan club is growing rapidly. She's shuffling around with a stronger wiggle, good to see, fun to watch.
Teams of doctors; Rume's (Rhumetologists), Exterminators (Infectious Disease) and now Detectives (researchers) all working together trying to figure out why her temperature spikes and subsides as it does, 98. something to 102 and back down. Vitals go wacky then recover, unstable... They're all looking for Waldo...the mystery bacterium.
Rume's are concerned about the multi mega doses of antibiotics...lupus flare potential.
Exterminators worried about blood line infection and/or contamination from a wide variety of possible sources... not wanting to dig around for it. Now the detectives are looking at every aspect of her most recent care. I think all the questioning is valid but what a brain drain on Angela while she's working on getting her health together. She should wear a "HI, I am Angela" sticker with a list of all the answers to all the redundant questions.
I haven't been as available as I wish. Drives me crazy. I drive her batty. The continuous flow of white coats with clipboards visiting her are amazed to hear of all the new parts Angela has in her. Next implant...USB port for her Ipod, that will empress 'em.
d00g status:
Nut case. Button pusher. Goes for the throat without notice. Freaked out, tweaked out - all under a soft candy coated shell. Feeling blessed to have so many people of all makes and models supporting Angela and I along the journey; doctors, nurses, family, friends, clients, coworkers and all in between. Feeling grateful for all the blessings that make life worth livin'...there's so many in every moment... thanks for teaching me that one my Angel.
Up in spirits. Makes a heartfelt connection with all whom enter. Gives blood willingly. Same-O Angela. Her fan club is growing rapidly. She's shuffling around with a stronger wiggle, good to see, fun to watch.
Teams of doctors; Rume's (Rhumetologists), Exterminators (Infectious Disease) and now Detectives (researchers) all working together trying to figure out why her temperature spikes and subsides as it does, 98. something to 102 and back down. Vitals go wacky then recover, unstable... They're all looking for Waldo...the mystery bacterium.
Rume's are concerned about the multi mega doses of antibiotics...lupus flare potential.
Exterminators worried about blood line infection and/or contamination from a wide variety of possible sources... not wanting to dig around for it. Now the detectives are looking at every aspect of her most recent care. I think all the questioning is valid but what a brain drain on Angela while she's working on getting her health together. She should wear a "HI, I am Angela" sticker with a list of all the answers to all the redundant questions.
I haven't been as available as I wish. Drives me crazy. I drive her batty. The continuous flow of white coats with clipboards visiting her are amazed to hear of all the new parts Angela has in her. Next implant...USB port for her Ipod, that will empress 'em.
d00g status:
Nut case. Button pusher. Goes for the throat without notice. Freaked out, tweaked out - all under a soft candy coated shell. Feeling blessed to have so many people of all makes and models supporting Angela and I along the journey; doctors, nurses, family, friends, clients, coworkers and all in between. Feeling grateful for all the blessings that make life worth livin'...there's so many in every moment... thanks for teaching me that one my Angel.
Back again
Angela is back in the hospital,
Complications arose with a significant fever and other unfamiliar symptoms. They are concerned about infection in her blood supply. Infectious Disease and her Lupus Doc are on it. More info tomorrow... She has her own room, no cot for me, wouldn't let me sleep in the shower.
Angela sent me home...rough day...sigh....driving her nuts.
Complications arose with a significant fever and other unfamiliar symptoms. They are concerned about infection in her blood supply. Infectious Disease and her Lupus Doc are on it. More info tomorrow... She has her own room, no cot for me, wouldn't let me sleep in the shower.
Angela sent me home...rough day...sigh....driving her nuts.
Wednesday, February 18, 2009
back in hospital for the weekend or longer??
heading back in tonight. spiked a fever and do not what is going on. will keep you posted as we know anything probably not until monday.. please don't email yet i will not have computer. doug will be with me. love and positive thoughts...................angela
Monday, February 16, 2009
another monday
Time flies when you are having fun. It has been two weeks since surgery and I am now in a routine with the home health aides, IV, labs etc. Tomorrow I meet the surgeon and the Infectious Disease Dr. to see what is next. I am hoping they have the answers. No real news to report. Your cards, calls, visits, food and other gifts have been wonderful. It is great to know you are loved. If you are reading this you are. I wonder what people do who are totally alone and with no help or little medical care? I know what they do...........nothing. That makes me sad and feel like a wimp when I complain, so chin up and all good thoughts.
Oh my nieces and sister made a beautiful prayer-meditation shawl. Wraps me in healing energy. They are so crafty and talented it amazes me. One of these days I will take up knitting again. Don't worry I will not send you all really long horribly uneven scarves for thank you's. I envy those who are good with their hands. Mine just want to dig in the garden !!!
Enjoy the day. Sun is shining here !!!
Oh my nieces and sister made a beautiful prayer-meditation shawl. Wraps me in healing energy. They are so crafty and talented it amazes me. One of these days I will take up knitting again. Don't worry I will not send you all really long horribly uneven scarves for thank you's. I envy those who are good with their hands. Mine just want to dig in the garden !!!
Enjoy the day. Sun is shining here !!!
Thursday, February 12, 2009
Reality hits
Today I faced the reality of what my life will be like over the next 6-12 weeks plus. Still positive and grateful for all the blessings in life but being in bed 90%, having to avoid any stress on joints 
and bones which seem to be worse(pain increase), wearing the limiting and not so comfy brace, IV infusions every 12 hours which last for @ 3 hours and all the home health care is a blessing yet I still miss being "normal". My other bones-joints seem to be worse and this hip will take a very long time to heal. I am on even stricter limitations and restrictions now. The infection and advanced AVN is upsetting. I spend 90% down on my "hospital bed chaise", but Doug re-arragned the room so it works much better and is easier access than any other room. I guess we are getting the systems down. If the other bone-joints can hang in there during this healing time I will be much more at ease. If my sanity holds up everyone will be happy. The Dr. limited my weight bearing activities on new hip because it is so fragile now which puts more pressure on knees and new shoulder (ouchy) which is where the IV port is. I feel like a mess. Loss of blood, infection, constipation and sleep deprivation are contributing. I can sleep for 1-2 hours then I have to move about and so I nap all day. Hey it sounds like vacation right? Thank you for letting me vent and I have learned that every day is a new day with new adventures. I will do my best to keep you up to date. I am not so good on the phone now and it seems when people call I am either asleep, in the bath or on IV. Doug's really needing to focus on this project so if he does not answer it means he is working or care taking. Emailing is best.
I send you all my love and gratitude.
and bones which seem to be worse(pain increase), wearing the limiting and not so comfy brace, IV infusions every 12 hours which last for @ 3 hours and all the home health care is a blessing yet I still miss being "normal". My other bones-joints seem to be worse and this hip will take a very long time to heal. I am on even stricter limitations and restrictions now. The infection and advanced AVN is upsetting. I spend 90% down on my "hospital bed chaise", but Doug re-arragned the room so it works much better and is easier access than any other room. I guess we are getting the systems down. If the other bone-joints can hang in there during this healing time I will be much more at ease. If my sanity holds up everyone will be happy. The Dr. limited my weight bearing activities on new hip because it is so fragile now which puts more pressure on knees and new shoulder (ouchy) which is where the IV port is. I feel like a mess. Loss of blood, infection, constipation and sleep deprivation are contributing. I can sleep for 1-2 hours then I have to move about and so I nap all day. Hey it sounds like vacation right? Thank you for letting me vent and I have learned that every day is a new day with new adventures. I will do my best to keep you up to date. I am not so good on the phone now and it seems when people call I am either asleep, in the bath or on IV. Doug's really needing to focus on this project so if he does not answer it means he is working or care taking. Emailing is best.I send you all my love and gratitude.
Monday, February 9, 2009
A little bad news
I just got a call from infectious disease and they said a bacteria has been found on a tissue and metal sample from the old prosthesis. Usually they are able to tell during surgery but the culture grew and it is still not fully cultured yet. I have to go into hospital for a Pick Line to run IV antibiotics everyday or so for 6 weeks. I will be unable to leave the house and will be under stricter care and watch. Immune system challenged enough. I should be home tomorrow afternoon if all goes well, which it will. Bummer but we will get through it. Nurses and PT will have to come for 6 weeks at least. Hold off on visits until I know what the deal is. It is not contagious but they have to follow strict protocol for my protection and others. Common to find this in old prosthetics and replacements.
Other than that and low energy-blood I am doing great.
Larry I got your massage and thank you !!! You get settled in your new home and we will plan a visit for spring. I have a few friends staying after Doug leaves and they plan to stay in intervals and help put along with family here of course. I have plenty of support!!!
Love,
Angela
Other than that and low energy-blood I am doing great.
Larry I got your massage and thank you !!! You get settled in your new home and we will plan a visit for spring. I have a few friends staying after Doug leaves and they plan to stay in intervals and help put along with family here of course. I have plenty of support!!!
Love,
Angela
Three Months :( wearing brace
Oh My !! I just found out I have to wear the brace for three months for sure and need to be even more cautious than first expected. I go to Orthotics tomorrow for them to fine tune the prosthetic. It is not fitting comfortably and bruising. I am grateful for saving the leg-hip but I did not expect this. Oh well, rolling with the punches baby. I will just need a little extra help with shopping, chores, errands etc. I am lucky it is winter and not summer !!
All is well. I am starting to get a bit bored so visits are welcome and I truly want to thank everyone for all your thoughts and such. I love reading your emails and staying connected. Time for a nap now !!!
Love
Angela
All is well. I am starting to get a bit bored so visits are welcome and I truly want to thank everyone for all your thoughts and such. I love reading your emails and staying connected. Time for a nap now !!!
Love
Angela
Saturday, February 7, 2009
Valentines day is Coming
Fun hearts and kisses designs for cards and more. Always fun to surprise your loves with a gift of love!!!!
Thank you
Thank you all for your warm wishes and prayers. It is always great to know how much love flows. I am sending it back at you.
All is good. I feel very tender today and sore. Usual after the first few days to begin feeling the scar tissue and bruising. I have a little more energy than yesterday. Blood seems to be beefing up so to speak. The sponge bath helped. I am wearing new PJ's from dad with green frogs against a blue sateen. Very cozy and fits well with the brace.
I am thinking of all my friends and family who are affected by the economy, health issues, winter blues or other stresses in their lives and I want them to know they are in my heart. I continue to hold the light in my heart for you each and every one. remember to breath and feel calm and breath out with a smile in the knowing all is perfect just as it is. Trust in that one thing no matter how stressful it seems or challenging it may be. I find the greatest peace after overcoming a time of challenge.
Love and Peace
Angela
Oh, Thank you wonderful husband for all your care and sweetness. I adore you and feel so very blessed and give thanks for you every five seconds. Do take care of you too !!! You have a large good karma account.
All is good. I feel very tender today and sore. Usual after the first few days to begin feeling the scar tissue and bruising. I have a little more energy than yesterday. Blood seems to be beefing up so to speak. The sponge bath helped. I am wearing new PJ's from dad with green frogs against a blue sateen. Very cozy and fits well with the brace.
I am thinking of all my friends and family who are affected by the economy, health issues, winter blues or other stresses in their lives and I want them to know they are in my heart. I continue to hold the light in my heart for you each and every one. remember to breath and feel calm and breath out with a smile in the knowing all is perfect just as it is. Trust in that one thing no matter how stressful it seems or challenging it may be. I find the greatest peace after overcoming a time of challenge.
Love and Peace
Angela
Oh, Thank you wonderful husband for all your care and sweetness. I adore you and feel so very blessed and give thanks for you every five seconds. Do take care of you too !!! You have a large good karma account.
Friday, February 6, 2009
baby it's warm inside
Hello from sunny dining room central. I have tunes, laptop, phone, walkie talkie, food, water, birds to watch, reading material, TV and a chaise on which to lounge while gazing into the snowy woods. It is a heat wave at 30 degrees.
Slow and restful day planned for next few days. I am asking visitors to hold off till next week when I am stronger and more myself. I am pooped from low blood and soreness of surgery. I do not know how some parts hurt but they do. Still having a time with sleeping in one place with a big foam between legs. I will be happy when I can turn over or move a bit. Shower day??? Well sponge bath at least. PT said I am doing the best she has seen a hip replacement do. The brace is helping and I am not worried about dislocating. The only problem is I can not do as much PT. That could slow down progress but hey, I have a leg and hip !!!! As soon as I can get in the pool the real work begins. The exercises they have me doing are a snap. That is all to report for now.
My phone is with me. feel free to call after 10 am. If I do not answer i am sleeping. Hugs
Slow and restful day planned for next few days. I am asking visitors to hold off till next week when I am stronger and more myself. I am pooped from low blood and soreness of surgery. I do not know how some parts hurt but they do. Still having a time with sleeping in one place with a big foam between legs. I will be happy when I can turn over or move a bit. Shower day??? Well sponge bath at least. PT said I am doing the best she has seen a hip replacement do. The brace is helping and I am not worried about dislocating. The only problem is I can not do as much PT. That could slow down progress but hey, I have a leg and hip !!!! As soon as I can get in the pool the real work begins. The exercises they have me doing are a snap. That is all to report for now.
My phone is with me. feel free to call after 10 am. If I do not answer i am sleeping. Hugs
Thursday, February 5, 2009
My funny and always amusing husband !!!
I just read the blog posts. How funny. I do not look like Robo-Babe, whomever she may be, but I must say the brace mixed with penguin flannels is a sight. I am well cared for and walking around, doing light PT. Today was full with two nurse visits, other visits and PT. I am pooped and like last night may go to bed at 8 pm if that late. Restless night and trying to get the systems down but all in all it's a good life. Trying to pump up blood and get lots of iron. A fine mix. Doug made a steak on the grill in zero degrees temps. But it was so good !!!! Dad brought Be Bim Bob for lunch which is one of my favorite Vietnamese dishes !!! Got some chocolates and an orchid to my surprise. Felling very opulent. Will keep you posted but still not doing too hot on the phone. Have to carry everything on my walker and it gets lost in the shuffle.
Counting blessings, great to be home !!! Love
A
Counting blessings, great to be home !!! Love
A
Wednesday, February 4, 2009
Robobabe get's to come home!!!
Although her blood levels have dropped, they're letting her come home. In-home nursing will monitor, worse case...transfusion. In the mean time...red meat.
She sends her love and will be in contact with her loyal fans once she gets settled...
She sends her love and will be in contact with her loyal fans once she gets settled...
Tuesday, February 3, 2009
Grace:
Angela makes every person who comes in her room feel good. No matter if they are cleaning, poking, prodding or causing pain, they leave with something more than a blood sample. She's radiant, glowing and in control. Her determination to live a quality of life regardless of circumstance is beyond remarkable.
Doing great...getting out Wed or Thur.
"Amazing"...so the therapists and nurses say. Angela is up, went for a few slow walks (with brace, walker and therapist). It's surprising how well she is recovering after surgery. Granted, the pain block is still working to some degree but for the most part she's been up and about without it. She looks very sexy-robo-copish with the brace, hospital gown and knee socks.
I don't see any bruising at all, unlike past surgeries.
We'll keep on with the up swing....what a trooper!
Monday, February 2, 2009
out of surgery update.2
I just spoke with the doc, Angela is in recovery now. Surgery took a bit longer.
They found 'metal debris' and bone fragments in and around the joint. They were unable to remove it all but felt that what was left would remain encased in the scar tissue. The surgeon said that she will require a brace for a few months to insure her hip will not come out of the new socket. There was some bone they had to remove which makes her hip a bit more unstable, but, she will be able to walk with full weight in 3 months.
He was very concerned about her right hip saying that the hardware there is rapidly failing and that there could be some serious issues if she does not have it replaced soon (next winter - knees first). Something to do with how bone reacts to plastic, the plastic being the padding that goes between the socket and ball, it is failing. The bone, where plastic is touching it, decays. It is possible the joint could separate from the bone with little forewarning.
Good news is that he used the most advanced matrix (joint material) which should not fail as the others have.
He said she was awake most the time, he had to ask her to quit asking so many questions while he was operating, something about him not being a very good multi-tasker.
We'll be here for a few days, 3-4. She'll be able to get around via walker but she'll need help for a few months. I'll be seeing her shortly and will give another update soon.
Love All,
dỠỠg
They found 'metal debris' and bone fragments in and around the joint. They were unable to remove it all but felt that what was left would remain encased in the scar tissue. The surgeon said that she will require a brace for a few months to insure her hip will not come out of the new socket. There was some bone they had to remove which makes her hip a bit more unstable, but, she will be able to walk with full weight in 3 months.
He was very concerned about her right hip saying that the hardware there is rapidly failing and that there could be some serious issues if she does not have it replaced soon (next winter - knees first). Something to do with how bone reacts to plastic, the plastic being the padding that goes between the socket and ball, it is failing. The bone, where plastic is touching it, decays. It is possible the joint could separate from the bone with little forewarning.
Good news is that he used the most advanced matrix (joint material) which should not fail as the others have.
He said she was awake most the time, he had to ask her to quit asking so many questions while he was operating, something about him not being a very good multi-tasker.
We'll be here for a few days, 3-4. She'll be able to get around via walker but she'll need help for a few months. I'll be seeing her shortly and will give another update soon.
Love All,
dỠỠg
Hospital Update.1
Howdy Ya'll,
Angela is in good spirits. She went into surgery about an hour ago and will be in there for about 4hrs. They're not sure what they will find but they have all the parts required for her retread... er, hip revision. The doc said they'll be able to add a 1/4" to her leg, the first replacement left her about 1/2" short thus all the lower back issues.
More later...
Angela is in good spirits. She went into surgery about an hour ago and will be in there for about 4hrs. They're not sure what they will find but they have all the parts required for her retread... er, hip revision. The doc said they'll be able to add a 1/4" to her leg, the first replacement left her about 1/2" short thus all the lower back issues.
More later...
Sunday, February 1, 2009
The last stand on soapbox
So tonight is my last post for a while and I thought it appropriate to mention the economy, or lack of it. Hey people what about a Novel idea called "putting your collective money where your collective mouth is?". The politicians want all these earmarks for special interests and bail out funds for corporate big wigs who have blown their top at tax payers expense. I am all about capitalism as long as it is tempered with humanity and a sense of spreading the wealth. The trickle down theory works great when the very rich, who make millions for large failing corporations, actually invest and spend in America while paying their taxes. I am not saying we should not trade but lets get real. Spending money keeps the economy afloat but it does not do anything for our betterment when we only shop in the big box stores who buy cheap cheap from other countries with little or no oversight. Does tainted milk ring a bell?
I have a great idea. Remember the company store? Many years ago when companies actually took care of their employees they had a company store for workers like a military commissary. They kept the prices down by providing a service and employed people to run the shop. Granted it allowed the boss to keep people on the job site for longer hours and they profited a little but the point is we can use that same theory for our own communities. Have you recently shopped at a locally owned family business? Bought eggs from the farmer down the road? Hired a small neighborhood contractor? Taken your old clothes in need of repair to a local seamstress? Patronized a small independent drug store? When we put money into our local-small businesses we put money into our community. Small business owners actually pay taxes, high taxes by the way. They hire our neighbors, donate to local charities, are involved in community events, provide benefits/workers compensation and they keep the wheels in motion and cogs greased right here at home with out huge salaries or golden parachutes. If we wisely spend our money after we pay our bills, chip away at debt and feed our family we should spend it where we say we want it to go. Same goes for businesses with ethical and green practices. They need support. Local farmers have eggs, milk, honey, produce and meat which is not shipped in from Mexico or New Zealand and it costs the environment less while supporting local economy. It all makes sense to me. In addition to these benefits we also save fuel by not shipping or flying products from distant lands. The best part of all is that you are supporting your neighbors, friends and family.
I am guilty of leasing a Honda and I struggle with this. There are those items which we have to bend on. I also understand people needing to cut back on costs by shopping at the big chains where they can save more. But !! what if we all decided we could live on less "stuff" and spend more wisely? Would putting our money where our mouth is make a statement and an impact? I think so. I am not an economist but I saw this train wreck ten years ago with all the ARM home loans being shelled out. I knew we were heading for disaster. I also saw it when big box stores started forcing small, independent and local businesses to shut their doors while buying disposable-tainted items from China. It is true that small-local costs more but it also gives more. You also build a rapport with the business owners. This is all about community. When we support local we can also afford to go global on the few items on which we splurge.
I guess all this bail out crap and corruption is really forcing me to look at how I spend and how I make choices about where my money goes. It is a process. I do not need much and live simply and it works for me. If I had young kids or a larger family it might be different. I do not judge others decisions I merely pose the questions of local or global? Box store or small independent shop? Spend or pay bills? Support neighbor or big corporate-corrupt big wigs? These are questions with which we all must struggle if we desire to survive this troubled economy and hold accountable the people who got us here while taking full responsibility for our own bad choices and overspending habits. What a great time to become aware. As I analyze my shopping behaviors and choices I see a better way. It may take time for me to adjust but it is a choice I am willing to make.
I have a great idea. Remember the company store? Many years ago when companies actually took care of their employees they had a company store for workers like a military commissary. They kept the prices down by providing a service and employed people to run the shop. Granted it allowed the boss to keep people on the job site for longer hours and they profited a little but the point is we can use that same theory for our own communities. Have you recently shopped at a locally owned family business? Bought eggs from the farmer down the road? Hired a small neighborhood contractor? Taken your old clothes in need of repair to a local seamstress? Patronized a small independent drug store? When we put money into our local-small businesses we put money into our community. Small business owners actually pay taxes, high taxes by the way. They hire our neighbors, donate to local charities, are involved in community events, provide benefits/workers compensation and they keep the wheels in motion and cogs greased right here at home with out huge salaries or golden parachutes. If we wisely spend our money after we pay our bills, chip away at debt and feed our family we should spend it where we say we want it to go. Same goes for businesses with ethical and green practices. They need support. Local farmers have eggs, milk, honey, produce and meat which is not shipped in from Mexico or New Zealand and it costs the environment less while supporting local economy. It all makes sense to me. In addition to these benefits we also save fuel by not shipping or flying products from distant lands. The best part of all is that you are supporting your neighbors, friends and family.
I am guilty of leasing a Honda and I struggle with this. There are those items which we have to bend on. I also understand people needing to cut back on costs by shopping at the big chains where they can save more. But !! what if we all decided we could live on less "stuff" and spend more wisely? Would putting our money where our mouth is make a statement and an impact? I think so. I am not an economist but I saw this train wreck ten years ago with all the ARM home loans being shelled out. I knew we were heading for disaster. I also saw it when big box stores started forcing small, independent and local businesses to shut their doors while buying disposable-tainted items from China. It is true that small-local costs more but it also gives more. You also build a rapport with the business owners. This is all about community. When we support local we can also afford to go global on the few items on which we splurge.
I guess all this bail out crap and corruption is really forcing me to look at how I spend and how I make choices about where my money goes. It is a process. I do not need much and live simply and it works for me. If I had young kids or a larger family it might be different. I do not judge others decisions I merely pose the questions of local or global? Box store or small independent shop? Spend or pay bills? Support neighbor or big corporate-corrupt big wigs? These are questions with which we all must struggle if we desire to survive this troubled economy and hold accountable the people who got us here while taking full responsibility for our own bad choices and overspending habits. What a great time to become aware. As I analyze my shopping behaviors and choices I see a better way. It may take time for me to adjust but it is a choice I am willing to make.
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