Time on my hands

For the past two plus months, and then some, I have had way too much time on my hands. I have spent two trips in the hospital, had home nursing, watched TV, listened to music, meditated, read magazines, books and catalogs. I have tried to knit, unsuccessfully. I have talked on the phone regularly to certain peeps and have spent much time staring out the window blankly while letting my brain run wild or simply empty. I have slept, not slept, tossed and turned, given myself daily IV's and spent way too much time with medical professionals and in hospital. I have pondered, prayed, projected, postulated and procrastinated. I've written, diddled, emailed, sent cards, read cards, Googled, blogged and Skyped. (Are we still in America? Words we never knew are now a part of Wikopedea's vocabulary). I have eaten and drank....perhaps even too much at times, yet I seem to find balance with it all when I take a moment to face the mirror. I know my weaknesses even better than most because I have lots of time to analyze them and correct them, if I am lucky. Faults, I have a few, yet they do not seem to be as bad as those poor fools on reality TV. Is that real? Really? In the end the Razors Edge is just what it sounds like: a thin and possibly sharp line between two worlds or two mental perceptions of reality. There are fine lines between everything in the human psyche, as I have discovered during this self imposed "sabbatical". I highly recommended taking personal time for an extended period. You will be bored and perhaps lonely at times but you will find things out about yourself that you never knew...whether you like it or not. If you don't judge yourself you can change, grow and actually love what you see in the mirror: the way the creator made you. That is what I find so wonderful about being a human spirit.

Winter not gone yet

I see people with spring fever after a few warm days out raking, mulching, wedding and clearing way for the sprouts to reach towards the sun. I had the urge myself after buying all our garden seeds, but something in my heart knows we are not done yet. Chickens are on hold this spring. Today I feel the winter chill and it will snow Sunday. I hope the fresh buds on our baby trees stay warm and toasty. I myself can not yet tend to yard care or gardening so I guess I am lucky because that impulse is so strong. After a long winter as we have had this year, with first snow in November lasting until a few weeks ago, one gets excited when spring appears. So for all of you Yanks...be cautious and let those leaves hang out a little longer to protect the tender new growth.

Today has been sleepy. Rainy-windy and cold make me want a fire in the fire place and nap or a good movie or a good read. I am reading an translation of War and Peace. Translated from Tolstoy's original edition. I did not realize he wrote a few. He had different endings and even some of the characters changed. During the time it was first written there was much turmoil and political unrest. This also has much to do with Napoleon and the bloody war between Russia and France. Yet many Russian nobles spoke French it was not considered "appropriate" among the commoners. Tolstoy was not as sensitive to this as he wanted to portray the truth as he saw it in a fictional text. He used French terms and language and even names(characters) in the first edition and later fell under extreme pressure to take out anything French which may cause political unrest. I am enjoying the read so far and am not too bored. I already am aware that the Russian writers from earlier times had difficult beginnings for those of us who do not grasp the Russian language and their need to explain the family tree and all relations-connections to the main characters. All the names sound the same anyway due to the surname use and maiden name added, I think that is how they did it. ??? If you know help me understand?

I was discharged from home PT today. Sally is my home PT and is wonderful. I have had her here at home for last three years. The one I see as an outpatient is Claudia and she is also fabulous. Both very different in style but equally great. I like to stay with the same care givers and trainers who understand the complications my body presents. Just like yesterday afternoon the infectious disease nurse(that does not sound right) called to let me know my white count was low and I needed to come in first thing this morning for the second blood draw of the week. I saw the labs and they have changed so much from just Monday. I feel like a fluid body of water rapidly changing with the tides bringing in whatever is washed out to sea. I feel like I need constant monitoring. Yesterday after the infusion I was so weak and tired I slept till 6:45. I got up only because dad called saying he was bringing over home made Mole'. It was fabulous !!! I love Mexican food and have been eating chili all week that I made Tuesday !!! So good and lots of avocados too. I need the fat said one of my favorite nurses. I have gained weight this past go around with being so inactive. I weighed more than I have ever weighed but just lost 5 lbs so now I am still 5 pounds over my normal-comfortable weight. Oh shut up all of you who are swearing at me. We all have our comfort zone and I have to stay thin to save my bones.. so there.

All is well and I am more concerned for many who I know who are dealing with their own health issues. There are too many examples and stories to tell of the sick, those in need of procedures and those who have recently passed or are preparing to die, but I will leave it at that. I do not fear or stay away from the topic of illness and death but I am sensitive to those who may feel it too morbid. "Hey it is a part of life".

Douglas is in hyper work mode for sure along with the entire team of people working overtime to get the job done and to bring it in under budget and under time frame. When I say under I do not mean less than I mean not above and over. Understandably all clients want it done fast and inexpensive. This client is very good to everyone and easy to work with so that is a bonus. Douglas seems to have gotten in his groove after two weeks with some stress but mostly happy with it. Dad and I talk about going down for a visit later but the Dr.'s will not let me leave. The lock down will continue for some time. I also know he is too busy to entertain even me. Although I am sure he would try. For those of you who want to visit with Doug understand he is working 7 days a week from 5/6 a.m. till late in the evening sometimes midnight. Do not be offended if he says he can not meet up. When on a project like this he is on the clients dime and clock and he wants to hurry up and get home !!! Plus another project immediately following will take a couple-few weeks so he is focused. I sure miss him !!! On that note good day to you all !!!

From The Dhammapada

"Victory is mine,

Knowledge is mine,

And all purity,

All surrender.

"I want nothing.

I am free.

I found my way.

Whom shall I call Teacher?"

The gift of truth is beyond giving.

The taste beyond sweetness,

The joy beyond joy.

The end of desire is the end of sorrow.

just a quikie

I want to let you all know all is well and I will post later. I have written many "blog" posts but have not published for you to read. I am in my state of introspection. Once I am out of my head I will let it spill out onto the pages of cyber space as a writer lets the ink drip onto paper. In the meantime may all be well in your worlds and may we all feel grateful for what we have and for the gifts in life. It is easy to focus on hardships when so much bad news is at hand. The real test of character is if one can accept the "bad" stuff and move forward with optimism and faith that all is in order. Our lives have great purpose whether or not we see this. What one will find in the challenging times is a choice. One can decide to focus on the negative and slowly melt into a deep depression OR one can accept the circumstances and see the miracles and gifts in the unexpected. This also means one must feel every emotion fully. This requires much reflective-quiet time with self. I always ask myself: " Self....What are you feeling and how can I assist in letting go of the attachment to feeling only happy-good thoughts? while at the same time truly feeling and releasing negative thoughts? ". The end of desire to make things perfect in our perception is a final goal.

The answer I give myself is to be honest, present, open, genuine and grateful. Then the seemingly bad stuff fades into the mist as if a wind came and blew away the fog of human suffering.

Too deep? O.K. I will write more later. I told you I have been in a state of introspection.

I know I have been bad about keeping in touch

Well.......I am in that phase where it is strange writing the same old story. The daily routine has changed slightly and I am still up and down but mostly up !! I would say I am 80% now. I have more alert time and moving around more. The labs are all over the place so we are trying to get all the electrolytes and blood counts evened out. There is one test which shows muscle damage and those tests are coming in high but erratic. First they were very low. So if they get too high I have to stop the antibiotic. Are there other options? Not sure. I am advocating for the Dr.'s ( 3 main ones) to have a pow wow and give me aspirations and cultures from samples of both hips after two weeks off antibiotics. They want to redo the right hip due to the plastic wearing away and now have metal scraping metal. But they have to see if it is also infected. Before they do this I want to know if the first hip bacteria is gone. Seems responsible to me. I guess there are other concerns and possible options for airborne bacteria. So not sure what is going to happen. PT in the left leg-hip is going slow but good. Can not do anything with the right even though it is my "good one". If the prosthesis cracks it could crack my pelvis and cause major damage. But I have to keep it strong so I can heal the other one. Balancing act is the word for now.

My good friend-aunt Mary is staying with me and we are eating well and laughing. We are observing this crazy world in which we now live and there is nothing to do but laugh. I feel blessed to have so many companions !! Nina will be hanging with me Sunday-Tuesday while Mary goes back to Chicago to check on her condo which she is going to place on the market. If you know anyone looking for a place in Chi Town let me know. Nina and I were thinking of attempting a visit to Grandma's. We shall see. At the very least we will have quality time.

Douglas is in Asheville and all is going very good. The client is very happy so far. They are in full construction-design mode and has to be done in 9 weeks. It sounds like they will do it. I can not wait to see it and mostly HIM. He is missing home but having a good experience and loves the team. He also is staying with our very dear friend in Asheville, Constance. She just moved into her new space and he says she is the ultimate hostess with the mostess. I wish I were there to yuck it up.

That is all I have to say today. I have been writing a more intellectual blog for later. My brain works overtime at night with many insights but hard to write for the public.

Much love to everyone !!!!
Angela

The day was bound to come

The day was bound to come when Doug had to pack up the U-Haul and truck and head south for a ten week project. He will be back once or twice. I sure miss him when he is gone. It is mutual. I hope he gets a chance to rest before he hits the road. Hint hint..................

I met with the surgeon yesterday and the new left hip is healing just fine. I am on less restrictions and have more freedom. I feel great about this. Bad news always seems to follow good when it comes to my bones-joints though. More deterioration of the right prosthesis has made it more urgent to get it replaced as soon as I am off antibiotics. I have four more weeks of antibiotics and they will wait a week then aspirate the right hip to see if it is infected. If is not we will replace as soon as Douglas gets back no later than first of June. I saw the X-Ray which shows a dramatic breakdown from several months ago. The metal and plastic fragments need to be removed best as possible. The knees are hanging in there as are shoulders. I have had this hip for 20 years which is a very long time for a replacement. I am grateful.

Right now we are just monitoring my blood work and body making sure all is working as it is supposed to and my body continues to accept the antibiotics. Some labs are still off and not sure exactly why?? But with more blood drawn today I am sure we will come up with a plan to get me leveled out. Resting is the best I can do now.

The sun is shining and it will be nice all week. The sun makes people up here in north country very happy. Someone told me today about their "Happy Light" for seasonal affect disorder. I hear ot works quite well. I notice that I feel tired and blue from mid January to end of March. It is the lack of Vit. D from sunshine and lack of fresh air. Also less social contact. Everyone wants to hibernate over the long winter. The saving grace is the pure white snow and how beautiful it looks and how cozy the inside feels. So there is balance with us, the planet and the universe as the Yin/Yang of life continues.

Happy almost spring !!!!

Many questions..........most curious ones

Many of you who are brave enough have posed questions which are difficult enough to ask and even more complicated to answer........but I will attempt to quench your curiosity in my ultimate quest to help educate people on chronic illness and lupus/auto immune disorders. Lupus is not like cancer or other "Hollywood" diseases which capture much attention. It is a hidden disease for the most part. Those of us who do go out into the "real world" may show an outward appearance on some days of having issues with joints, walking, lifting, avoiding sun exposure, loss of hair, skin sores, blue fingers and toes, rashes, ports/piccs or other catheters with tubing appearing on our arms, necks or legs. We some have colon or urine bags and others who are dialysis. You may notice a fat and plump face with puffy eyes representing signs of possible steroids in action saving one's body from it's own attack. Or you may notice dark circles around tired eyes filling a pale face. These could all be signs of lupus. What you will not see unless you are very close to the person affected by lupus is what happens through out the day and night and during a regular month. A day in the life of a typical lupus patient does not exists, but we each have a routine which may change day to day or month to month. Mine right now, as some have dared to ask, is one of routine and schedules which are mostly about medical care and treatment or prevention. I am offering a weekday example.

As I explain my most recent routine I want you to understand this changes weekly. Two weeks ago I was in the hospital getting ready to come home post surgery and infection to an uncertain future. Now I am settled into a new schedule which may change over night. Lupus is like that and things change very fast sometimes. I also want you to know it is not just my life but my devoted husband's, father, family, care givers, Dr.'s, nurses, physical therapists, body workers, friends and others who all are impacted on various levels during the day, week or month. So in the next paragraph understand I am only explaining this past two week routine. My hope is the next two week routine is filled with more outdoor walks, garden prep, more social contact, higher quality of life with lots of motivation and more energy !!!!

Morning begins whenever I awake between 8-10 am depending on how early I went to bed and how well I rested. I take my probiotics and yogurt first to help avoid intestinal issues with antibiotics and steroids. I drink tea or coffee depending on how I feel. Juice depends on stomach and varies between OJ and prune juice. I eat a very healthy and high protein breakfast as this is the most important meal of the day. Usually Douglas and I eat together, share our dreams, our day's schedule and plans. It is a most enjoyable time as we sit looking out into an oasis of a back yard-wooded area and connect with one another before we are too busy. By this time Doug has been up for a while and has already spent hours at work, emailing, reading, studying, feeding the birds, creating designs in his doodle book with at least one computer on (geek). We slow down for this moment as it is brief. After we clean up I move to the medicine drawers and take out all my meds and supplements for the day. These change often but usually around 20 per day. Some pills, creams, shots and infusions. I set aside the ones I take at lunch and at bedtime as well. I have a list to follow but some days I do break from the norm as my bodies leads. We eat lunch or snack depending on the day and touch base with one another as the day goes on.

Once I am cleaned up, fed, filled with meds and connected to husband I begin my day of calls, emails, working on computer, web site updates, blog and writing. I usually have a nurse call or visit depending on the day and if they want blood and urine. I have home med deliver the IV antibiotics and medical supplies every wed. and get PICC line changes and labs drawn every Monday and some Thursdays. PT comes when I am able to do it. After lab results return they sometimes adjust my meds. I check my vitals(BP,HR and temp) which has been great lately. If I feel good I get a few things done around the house and in the office with regards to Doug's business, personal affairs and lupus advocacy. Some days I have phone meetings, lunch meetings or we meet at the hospital, usually involving volunteer work, which is now rare under the circumstances, but I am getting back in the groove and next week we meet to plan the next annual Butterfly Walk. I do some chores and exercises through out the day at least 3 rounds of exercises as body allows with walker and leg brace in tow. Most of what I do is range of motion and Isometrics. Some stretching only in areas able to get full stretch with out causing damage. Most chores fall on Doug's lap. He cleans, does laundry because it is in the basement, takes out compost,trash and recycling, shovels snow, ices the side walk, house maintenance, runs errands sometimes with me either sitting in the car or in tow, etc. I am now able to cook although he cooks often.

At 2:00 I get ready for my 3:00 infusion. I take the drug out of the fridge and let it warm. I prepare all the needles, IV line, change the blunt end canulla and start flushing lines with saline etc. By 3:00 I am ready to infuse 230 mg of Daptomycin into my port (PICC) which is in my upper left arm. They moved it from right arm to left in the hospital. Some days I have to change out supplies that get crusty-bloody, but usually everything is smooth. By 4:00 I am done and feeling slightly nauseas and tired. After cleaning up my mess I rest while watching TV and dosing off to sleep. By 5:oo I am ready to consider dinner and checking emails, voice messages etc. I usually talk for a long time with my sister Martha while she is cooking dinner and at times get a chance to chat with my nieces about their day at school. Some days I go to bed and take a nap before dinner. Some days I sit by the back porch with the doors open taking in the air and sunshine as we have had a few unseasonably warm days. I poor myself a glass of wine and ponder the day, news, life and all we are here to consider in this moment. Some have called this time of the day the "Groaning". It is that time when everything sits still and one is alone with their thoughts watching sun set and birds go back to their nests. My chipmunk friends sit with me staring in the same direction as if it is a natural order of life. Doug usually pops up from studio-office after his daily walk to connect, discuss dinner and get a much deserved beer and snack. Then he returns to the "Man hole" as I like to call it and I return to phone calls, emails, news check online and dinner prep or at least a list of "how to" for Doug. You know..........boil water, insert rice, bake chicken and steam greens. More complicated but you get the gist. Then we eat at the dining room table and chat. I take my evening pills mostly supplements with full belly. After we clean up and wash dishes Doug showers and gets me ready for shower by wrapping cyran wrap around my PICC and taping it up so no water can get in. He places me in the shower with a seat to bathe and then change clothes and prepare for either a movie, a book, blogging, reading, or simple brain out TV but usually only medical shows??? I always wanted to be a Dr. not a patient, but I love to learn. Doug usually continues working for a bit and closes up office-studio for the next day. Our night ends around 9-10 pm. We do enjoy our long chats before sleep and back rubs. I usually keep him awake as this is our joke. He tries to sleep and I try to keep him up. By 10:30 we are both snoring or in deep REM. Awake by 2 or 3 am with pains, hot flashes or other issues and also needing to pee and perhaps take a pain or sleep med or rub lavender on my head. Doug's back seems to wake him up and he usually makes tea and stretches for a bit then back to bed. Needless to say we get little rest at night around here. But we are together and have a roof over our head which is warm and safe. Blessed to be sure.

That is our day. Mixed with him leaving town to work and various Dr.'s and hospital visits this is it for the winter moment, soon to change. I hope this wakens you to the questions of "what do you do?". It is meant to enlighten those who have never lived with chronic illness. This past two weeks have been a breeze.

Lovely day

It is so pretty outside. There are many little critters scurrying about, eating the bird food and worms and seemingly preparing for an early spring. Our two white swans are down the road in the pond and the geese and ducks flying over daily. I have the sliding door open with the fresh air filling the house. Nice!! I would go for a walk with the walker but it gets so muddy due to a very wet week. Lots of flooding in the area. When it dries I might be daring. After my infusion I am very tired so I have to get everything done by 2:00 because it is sleepy land after that. I have not been to the barn to brush and love on Bart but very soon !!!! He seems happy in the pasture with the other horses.

Knitting project not going so well. Best of intentions. I'll wait for my friend to assist. Doug got a kick out of watching me pull apart a weeks worth of work. Eeeeks. Better with growing vegetables.

I ordered two new books from Amazon......."War and Peace" and "Anna Karinina". I have read WP but do not remember much. I feel everyone should read at least one Tolstoy. Plus I feel it speaks to our times a bit. I can concentrate better now and need a distraction like this to engage my mind. Also reading about gardening, chickens and eggs....................

I am going to a medical lecture on Wednesday about BHRT. Bio Identical Hormone Replacement has been challenging Dr.'s, women and pharmacists with the question: "Do women in their middle years deserve to have a natural way of controlling loss of hormones while at the same time having a more healthy and peaceful life?" In other words do we need to suffer? Men too. I know men who have lost testosterone and they need their hormones to abate cancer and to help with aging in a healthy way. I think we loose hormones faster in our new world of unhealthy food and environment. It should be an interesting talk. DHEA is now being used for lupus patients as well.

We are also having our Butterfly Walk meeting at UM next week to begin planning and also to discuss another educational event planned for May. I have four Dr.'s appointments in next two weeks to look forward to and will probably need a new PICC line placed in a week. I seem to be bleeding and you can only have them in for a month. I will be on antibiotics till end of April at least. As long as it is out and I am done by the time the water is warm.

My friend-auntie Mary is coming to stay for a bit while Doug is gone. She arrives Thursday. We have plans to cook and I will have her help me start my pepper and tomato seedlings for the garden. She will have plenty of veggies mid summer too as we always grow enough to share. She is an avid gardener. Her cottage on the island is filled with shade plants and really has filled out this past year. I remember she also used to work at the botanical gardens years ago. So we will have fun. Sad for Doug to have to go south but that is what it takes in todays economy. he has always worked on the road but I usually go with part time, so this will be different.It is only a couple months. No biggy. I can not imagine what the troops must experience. On that note I am tired. By By.

Neener my love

Nina you make mean greens and Orchids. Thank you. It reminds me of when we lived at the bio- dome and would make collards and chard we grew. Granny's Chicken comes to mind too.....Wouldn't that be a treat right now?........So thanks for the drive by.

So far so good

I am the second Daptomycin IV and all seems to be tolerable. I just get a little tired and some muscle weakness and soreness. They keep an eye on muscle enzymes and all symptoms. I think this one will work out just fine. It's just a half hour-45 minute infusion or and hour if I need to slow it down. Nap afterwards and all is good. Let's hope this is the miracle drug for the bug. They may have me take an oral for a few months as well once we are done with the heavy guns. I also read about oral hydrogen peroxide and clove oil as good antibiotics for this type of infection. I will look into all natural prophylaxis.

Yesterday at the infusion room everyone was so nice and welcoming. The Dr. on call for McCune, Dr. Patricia Cagnoli, who is very well respected as an associate director and instructor in the UM Lupus Program and Internal Medicine, came by to check on me while he is out of town. She was very warm, sensitive to Doug's concerns and thoughtful. I appreciate Sue Olsen RN and Dr. Gandhi as well who both work in ID. Sue called to wish me luck. You see all this is the human component which makes the process of being a patient so much easier to handle. My home nurse Elizabeth is great as well.

Gotta go IV running out. Thanks for checking in on me and Doug and know you are all in hearts and prayers daily. I realize there are many others who are going through trying times. To all of you who are we wish we could help more.

Human Hind Sight

Looking back over the past weeks I can see how a fissure can turn into a break quite easily under the lightest of pressure. I have had some time to reflect over yesterday and the night before. I spoke to a Dr. friend who helped me put some things into perspective from a physicians side. They have to keep a personal distance from the human element to protect themselves and make unemotional decisions which can cause great discomfort, hardship and pain to the patient and family whom they are treating. So they put up their shell and do their job with out allowing themselves to get attached. I can relate to that, however, at some point there does need to be a human connection. It can happen because I have it with many Dr.'s and health care professionals. I also see how they turn into different people when wearing the white coat, as do patients when they adorn themselves with hospital gowns and IV bags. In that way we each have clearly defined roles and numbers attached to each case so the humanity can be placed on hold while administering medicine. I do not agree but I accept that is "what is". I will be making it more of a mission to bring in the human element. Today at 2:00 I go back to hospital for a new infusion of antibiotic (Daptomycin). Hopefully it will work. They think I will only need the IV for a month. I hope that is all. Can you tell I am stir crazy? In need of getting my life and health back? heck yes !!!!!

The birds in our feeders are becoming more varied and even finches are landing once again. The ducks and geese are flying back up north and a change is in the air. I saw a woodchuck but not sure if she saw her shadow? Friends are talking about their gardening plans for the year. We compare seeds and plans as if we were entering a 4-H club. The excitement of growing food and digging in the warm dirt gives hope and a sense of accomplishment seldom found in our highly technical world of sterility. I look at the homes in subdivisions as I drive by and notice not a single child playing outdoors. It is a whole new world. So perhaps spring will bring us out of our shells and we can begin the plans of outdoor adventures this summer and connecting with mother nature.

sometimes emotions get the best of us

During this entire five weeks of ups and downs due to "infection" and antibiotics it finally got a hold of me. I do not cry much or get too upset. I tend to care more about others feelings than my own, but last night I broke down like a dam breaking under pressure of rushing waters. I am exhausted, frustrated at the whole situation and feeling helpless, which is rare. I am usually the advocate helping patients deal with this stuff not the other way around. Humbly I look back and see Douglas and I have not had a break from the stress of it all. In a week he will be in NC working 16 hour plus days and I will be here on a new antibiotic-homebound and weeks behind in physical therapy.

I keep waiting to wake up and feel good but after an hour or two of feeling good I slide back down. No particular reason I am just not quite right. I was feeling so good days after surgery and now I feel weaker than I have in a long time. It is not anyones fault but there does seem to be some issues with communication and understanding of my total condition by those who do not see many lupus patients. It is a difficult disease. my lupus Dr. is out of the country which adds to the concern.

I also just opened a letter from Home-Med telling me I received a recalled batch of antibiotic "Vanco" the week I went to hospital. That could be the culprit of all the illness since that time. it would explain a lot. This would be the second time I have taken recalled meds with horrible side effects. Can you understand the frustration? Sorry to whom it may be aimed but this is a life. A human life and not a number or statistic. The human element is not supported in most medical situations because of the failed system with Dr.'s and nurses who are wonderful and caring but only have so much time with too many patients in their care. More patients die while in the hospital from medical mistakes than any single disease. Check the stats on Oprah.com(do not quote me ask Dr. Oz). This is why advocates are necessary. Us patients and worried family members are often considered a pain or high maintenance yet when a physician has an ill loved one they are lions. We as patients must take our lives into our own hands and ask as many questions as possible. Knowledge is power and power heals. I am using this experience to help my situation and others. I still feel UM is one of the best and I will continue to be a strong advocate and spokesperson for the lupus program, but I will roar !!!!

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

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.

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.

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

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 !!!

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.

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

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

Valentines day is Coming

http://www.cafepress.com/coolpositive/6127086

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.

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

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

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...

Sorry for lack of communication!!!

My Angel reassured me 'everyone' had her blog...

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!

"amazing"...

...so the therapists, nurses and Doc's say. Angela is up, went for a slow

All is swell. She looks great, pain is under control, she's awake, sharp and asking lot's of questions...
She's in a shared room, not much room for me...she's good for the eve. Cold bed for me tonight...
We'll see where she in the a.m. I'll update then.

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

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...

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.