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.