Tears

It's 9:11 pm as I start this writing. It's been about an hour since I finally heard from Angela's Infectious Disease doctor...day's late. I have a mixed bag of emotions I'm working through at the moment. I just took my sweet wife to bed doing my best to soothe her in all of her tears. Typically she is the strong one; I’ve never seen her cry in such a way.

I've been witness to Angela enduring much pain through the years; fractured bones, numerous surgeries and a deep tenderness for those whose hardships extend far beyond her own. Immediately after her shoulder replacement she kept herself centered for hours, without tears, without any pain management while the hospital staff awaited instructions as to how best deal with the pain block which slipped from its targeted position. Doctors orders were missing…Angela’s pain threshold is so far beyond what most can understand. Tonight though was a different kind of pain.

Angel is at about 65% of herself, she just hasn't bounced back as she normally does. The hip surgery isn't the issue; it's the most recent bought with practitioners and their protocol which has taken the wind from her sails. She's craving to get back into physical therapy, to push herself beyond her range of motion just to reassure herself that she will indeed be able to plant her garden and walk in the grass...something is holding her back this go-around.

A number of days passed since her successful hip surgery when we received a most important call from the Infectious Disease dept at the U of M. An air of ‘emergency’ rushed us into the hospital to control an infection which cultured 6 days after the surgery from material removed from the failed hip joint. We were notified of the find days after the culture was recorded. Infusions of powerful antibiotics were I.V.'d in hopes of controlling a bacterium which may have grown from something other than her tissue; a 50% chance it actually existed. A PICC line was inserted through her arm into an artery to ease accessibility and discomfort of repeated blood draws and drug doses administered into what little veins she has left from years of chemo and other. She was fortunate enough to be able to be sent home for the six weeks worth of antibiotic infusions; to heal in a better environment thanks to home nursing.

Soon, a fever surfaced and she was re-admitted to the hospital for more antibiotics and blood draws. Now her vitals started fluctuating and Lupus kicked in as her body attempted to deal with...an infection? I must admit, as did Angela recently, we weren’t sure if she’d make it. With the doctors coming in asking us what we want done in case CPR had to be administered, we had reason for concern. For some reason, perhaps because Angela is a veteran at caring for herself and knowing what her body is telling her...we sensed her body was rejecting the antibiotics. As a precaution Infectious Disease orders more antibiotics - administered on top of those Angela's body was already rejecting. ID seemed not to yield to our concern for a Lupus flare. Something was amiss, we both felt it in our bones - more so for Angela. Bone crushing pain comes with the added steroids used to control the now activated Lupus and pressure from a fever which repeatedly jumped from 98 to 102+ in a matter of minutes. This went on for days...yet, still, no sign of the doctor who set us on this tumultuous journey. Enough! The amount of time in the hospital and the seemingly dangerous redundancy of blood letting, temperature spikes, anti-biotic over-dosing and lack of sleep made it clear that Angela's hospital stay was futile and causing more harm than good. A break from the treatments a must...! The doctors all concurred, it was in Angela's best interest for her to go home and have a break from all the TLC.

After a weekend home; a stable environment, Angela’s vitals returned, somewhat reluctant but comparatively better. A follow-up exam by Infectious Disease a few days later was intended to start Angela on a new antibiotic. A few professionals we spoke with declared the new treatment as an "experimental" as did our on-line detective work, yet, Infectious Disease said it was a common treatment. Angela, through her research, found that our insurance didn't cover the drug. Upon sharing this info with I.D., the doc declared that in fact it was covered and that she sent people home on it all of the time. It was her intention to send Angela home with the new antibiotic so, as the doctored said, I quote, "…Angela won't be tortured anymore". To Dr. ID’s surprise, her nurse entered the room stating that, in fact, the anti-biotic that is sent home so freely with so many ill and financially strapped patients is NOT covered by insurance!

Here we just threw away thousands of dollars worth of antibiotics and equipment we were unable to use and yet we were being prescribed more of the same for a now 30% chance of infection...and being prescribed something that is considered an experimental drug of which we will have to pay for....?

We were sent home again, being reassured that we'd receive a plan of action to deal with this supposed infection with a treatment that our insurance would cover...good news for a couple who moved away from their source of income to be treated by one of the top rated hospitals in the country...Good...we'll have a course of action, I will finally be able to work after months without, out of state, while my wife is being cared for by the best of the best. It's was last week when we last heard from Infectious Disease and now, days later, I hear from her… only after an SOS call to a U of M patient advocate at the hospital this afternoon. We had not heard from nor could we reach anyone who was related to our case - Infectious Disease was closed today. Even with this evening's call from the Doctor who initiated this insane experience, I remain unsettled; she was oblivious to the situation and to a course of action.

This is what brings me to this writing. Angela has given every aspect of her life over to the University of Michigan. She even donated her body upon her death to the U of M just so doctors-to-be will get a glimpse of an Angel – eternally infused with hope, surgical scars as maps, organs stressed to the max, metal joints through-out and a heart of solid gold....just so they can learn to be better doctors. Yet here she is, barely able to stand, talk or even cry...with a hose in her vein which no one can do anything with until they have a doctors orders...which we have yet to attain.

What the hell happened???? Angela has donated her life to the hospital. She lives to give to the U of M and here she is crying tears because why? Pain? Fear? Exhaustion? Yes to each...but most of all...because the human element has been left out of her care. She is in a report, a file, somewhere...lost amongst all the other patients who get 15 minutes or less of time from professionals who are in the business of taking care of people…

Wait... For some strange reason, I can't help but feel that the business of taking care of people is really about a health care system that takes care of itself, the insurance companies, Big Pharma and their new and very expensive wonder(?) drugs. Instead of building multi-million dollar atrium's and architectural wonders out of hospitals, the money they invest should go into teaching doctors-to-be how to tend to patients as people rather than patients as line items!

I assume I'll hear from Doctor ID tomorrow....better then than right now......

(as an added note: I am grateful to the many health care professionals who have provided Angela with the care which keeps her giving the best of herself...thank you!)

Frusration breeds contempt

I am frustrated today. Last Thursday infectious disease told me I would here from them in regards to new antibiotic by Monday and here it is Tuesday and no word. I even called and left a message. What am I to do? I am putting my life on hold for this and pretty sick of it. If I could pull the PICC line out and end it all with out damaging insurance and my health I would. The least they could do is call me to tell me they are trying to figure it out? The human element is missing in this equation. Most frustrating. The greatest brains in the US can not see the human side? If it were their wife, husband, sister, parent or child they would feel it to the very depths of their being.

Had to vent. Other than that all is well. Rainy and cold today and spring is on it's way withing a month or so.

I read an interesting article on Tibet and their fight for freedom of China's rule. So many details over the years we have forgotten. The CIA helped in the beginning but it was a failed operation. Now Tibet is stuck. No autonomy or active political leader within the country. The DL is a spiritual leader who acts as political leader but with out any power. He does the best he can with the tools available. It seems we would learn much from their patience. I wish China would leave those poor people alone. Let them figure it out. History.net for further information.

Enjoy your day............................

Could it be spring? "NOT"

We are always faked out by a warm snap and rain storm. Today we watch the rain and warm air-fog daze us into a false sense of spring. Spring forward tonight before you go to bed. We will take what light we can get. It makes me feel like having a fire in the fireplace and reading all the magazines I collected for my recovery period. I am ready for a good book though. Any tips? Something with a good story.

As we face more lay offs in the US and hear all the news on the air waves it is difficult to imagine where the world will be in a few years. I hope our future generations are learning from our mistakes and mis-spending. It is a double edged sword. If we save we stop commerce. If we spend what we do not have we will find ourselves in bankruptcy and living in tent town. The TV financial "experts" have lied to us and told us to invest, invest and spend even while our credit cards were over limits and costing us more and more interest. Now we have bailed out banks who have the nerve to raise fees and interest rates on us? They should be paying us a percentage of the $6,000 per household we loaned or gave them to bail them out. Finally the curtain is being raised and the financial-OZ is a bad person. But you will not be reading about it in news papers in the near future because they can not afford to print. It is amazing to me how the world is changing right in front of us. Hang on to what is important and support your local businesses. They need it now and we can survive this turmoil by helping our neighbors. In that there is hope.

For the record

I did not post this photo.............Doogie? Whatever will I do? Funny non the less. What would the world do with out you tube now? I do not even know how to use it but I know it is chock full of interesting photos.

My dear friend of many many years just visited for a couple days. Sharon I adore you !! Thank you for your help and love. She was a huge help for Doug and I during a trying period. I am doing better but as I get stronger the days get closer to try another antibiotic. I thought they would challenge me with Daptomycin yesterday during my visit to the hospital to see Dr. Gandhi in infectious disease or today at home, but we will hold off till Monday to make a decision. My blood counts are coming back up and leveling out on all labs. There is a little issue with insurance. They will not cover the IV antibiotic at home as it is a new and expensive medication and so we have asked the hospital to cover the costs if they feel so strongly I need it. I will make the final decision weighing out all options and ramifications. With a right hip revision in the near future(and knees) I feel I should be on some kind of antibiotic. They now are telling me I could take a pill but there is no guarantee it will work. Day by day is where we are with all of life as most of us are. I look forward to a day when I am back to myself, strong and healthy. I want to dance, feel the wind in my sails, work in the garden and do all the things I enjoy with out being a pin cushion or medical experiment. Glad to help future generations and to find a cure for lupus but the rest of it really stinks sometimes. I am a fighter though. Nothing will knock me down.

Douglas is not sure when he leaves for NC as it also seems to change weekly. Behind schedule and that is a little frustrating but it works with our situation so he can be here with me during this time frame. To be continued.

It is 60 degrees out and I can feel the spring sprouting but we will surely have one or two more cold snaps and snow falls. Michigan is notorious for having an April snow. I can not wait to dive into the lake this summer. The water is up and I am in need of exercise. Pools are cool but lakes are great !!!!

Love and blessings,
Angela

clarify "diapers in white coats"?

Let me clarify diapers in white coats? Some did not understand of whom Doug was speaking(writing) during his delirious hospital stay. Let me explain. U of M is a teaching hospital. Each attending physician has a few interns, residents and students by their side learning the trade and hopefully bedside manners. Some are as young as 22 years old to 28. They all look like kids to us middle aged folks. There were a couple who had little hospital experience and it showed. I gently did explain to one of my Dr.'s for their own good. They need to know these things. One poor fellow fell into my bed with nervousness. I giggled and then squinted eyes in wonder. Another did not read my chart, had a language barrier and we thought he was asking "what are the symptoms of lupus" when in fact he was asking "what are your symptoms with lupus". All cleared up now? For the most part the young dr.'s to be were very intelligent, thoughtful, provocative and had good bed side manners. They were prepared. two really stood out on my mind. I will mention no names. One Dr. on the floor was very attentive and invested and we loved his sincerity. Doug's humor can be askew after weeks of little or no sleep and very bad food.

All in all a teaching university is very important in shaping these young minds and hearts. One patient can change their entire perspective and it is my wish to be a part of that change. The diet and nutrition is next.

the wind in my sails

My dear friends and family your kindness is keeping me going. Karin thank you so very much !!! Our visit was great and comfort food fabulous. Yes I am very focused on food, but what else do I obsess over? Don't answer..........I just want you all to know how much I appreciate you. My friend Sharon comes tomorrow for a couple days and I am really excited. We are going to knit a cover for my PICC line and port. I get it caught on things and it looks scary. Me, being so not crafty, will attempt a project I hope I can easily accomplish. Those of you who remember when I tried to knit 25 years ago will know what I am saying. Those size 45 sweater vests must have been put to good use as a doggy bed or door mat? In polyester no doubt. Give me dirt and recipes and I am good but give me yarn and who knows what will happen. Forget buttons too.

I am feeling better today. In a week Douglas will be going south and still trying to wrap our heads around that. Wish I could go with him but he can come home during project.

Snow feel on NC. What a great thing. my nieces played in the snow. I hope you all enjoyed ot down there. We get another round Friday.

Love and peace out

Today is a good day

I feel slightly back to normal for the first time in weeks. I woke up refreshed and had some energy. I am starting to see the corner of which I am about to turn. My dad, step mom and god father visited yesterday and made me laugh. All good in the hood. It is great to see relief on Doug's face so he can focus deeper on his creative endeavors. He has been working so hard and is truly a trooper. At least he is sleeping now. No hospital staffers popping in all hours day and night with lights on full blast and speaking loud as if we are deaf. What is that all about?

So for those of you faint of heart or who have a hard time hearing about medical issues or pain please do not read this entry. I am writing this bog for many reasons: To keep loved ones informed, to help spread the word about the importance of finding a cure, raising awareness and writing a book. I would be untrue to not fully explain what is going on in an honest way. Polly Anna is great for those who need protecting but the truth is what heals. I need to express what I have been through and continue to experience for the record and to help go through the healing process on every level. So hold your hat it is going to be a bumpy read. don't forget this is an online journal.

First off the surgery was easy and went quite well. My left hip received it's third metal acetabulum (ball and socket). The post is still doing well and in tact. The surgery was four hours of painstaking dissection and removal of little metal shards and a large prosthetic with screws and all. Scar tissue was also removed and some calcium deposits filed down. I do not have a butt now, that's one OK thing. They had to change the position and give me an extra 3/8 of an inch to even out leg length which has already stopped lower back pain and sciatica pain. I was awake with a local anesthesia and epidural. The surgeon, who is very wise and brilliant had to tell me to stop asking so many questions so he could focus on the surgery. I read the report and it was very long and detailed. Quite the carpenter !!!! I wear a full leg-waist brace to hold everything together for another month. PT is very simple for now for fear of dislocation and damage to other bones. As soon as I can swim I am in the pool-lake for a spring-summer training session. The pain is very tolerable as long as I use the walker like a good girl. So that part is all good news.

The Bacterium they found inside the hip called Propionibacterium acnes which is a skin infection that could have been in there for a long time or could be a contaminate??? We still have to hit it with the heavy antibiotics as Doug explained in order to avoid further spreading into blood stream, joints and heart. I did not tolerate the first three antibiotics they tried so we will try a fourth one this week called Daptomycin which is a once a day IV through my permanent PICC(port). "Dapto" is a derivative of soil. The side effects I experienced from the previous antibios started with chills, fever spikes as high as 104, lupus flare, slight delirium, heart irregularity, dehydration, muscle weakness-pain, extreme bone pain, heart murmur, circulation issues, freezing feet and hands, lack of appetite, acid indigestion, red hot face, pruritic hives-rash, sweats, irregular vitals, lack of urination, burning upon urination, diarrhea, nausea, constipation, throbbing headache, ringing and pounding in ear, brain numbness, lethargy, malaise, muscle cramping and plain old exhaustion. I am writing about this because it could save someone's life who is experiencing some of these symptoms on antibiotics and not know enough to get help. I also want people to understand why Douglas is beside himself and stressed because watching someone you love go through these things is down right helpless torture. He was with his dad in the last days of his life with terminal cancer and he has supported me for 17 years but it never gets easy. I watched my mom and grandma go through it as well. I also was with my best friend, Lainey, while she lost her battle many years ago and still shed tears for that sweet and lovely young woman, friend,daughter, wife and mother. If I can put a human face to this disease and all it's ramifications then I have succeeded. I will be giving a testimonial in May for University of Michigan Lupus Program so we can encourage people and organizations to donate for research. If you are interested in this let me know. Go to www.lupusadvocacy.org and see the links page for further details. This is the least I can do.

On a positive note I feel upbeat today and have faith all is well and as it should be. Life has a way of working out perfectly if we allow it to flow. Let the miracles in the unexpected shine through in all you do. I am grateful for the opportunity to share this in a deep and meaningful way.

It's me angela...not waldo

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

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...

'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?

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...

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.

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.

...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...

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.

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".

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;(

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