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.
Tuesday, March 31, 2009
Thursday, March 26, 2009
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
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
Thursday, March 19, 2009
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 !!!!
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 !!!!
Tuesday, March 17, 2009
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.
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.
Sunday, March 15, 2009
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.
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.
Friday, March 13, 2009
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.
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.
Thursday, March 12, 2009
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.
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.
Wednesday, March 11, 2009
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 !!!!
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
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
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!)
Tuesday, March 10, 2009
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............................
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............................
Saturday, March 7, 2009
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.
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.
Friday, March 6, 2009
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
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
Tuesday, March 3, 2009
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.
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.
Monday, March 2, 2009
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
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
Sunday, March 1, 2009
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.
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.
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