Thursday, October 29, 2009

Two week post op check up........

I met with my surgeon yesterday. We were there for 3 hours and had X-rays. All looks good, yet it will take many months to know if the bone grafting is working. There was one area where they could not get the grafting material(calcium combo) into which will be a dead hole (around sciatic nerve) but that is OK because it will not affect, hopefully, the strength of the good bone holding the ball and socket in place. But not out of the woods yet. For the next month I am to lay low and use the walker and brace at home with little PT except for the very light range of motion and isometrics I do laying on my bed a few times a day. Everything is very fragile, easily dislocated and the pain is still pretty high, like me. Home nursing will continue to come. In a month I go back for next check up. I have to wear the brace at least 6 more weeks so I can use it as a costume Saturday and scare the kids (Robo Babe). For two months I have to use the walker. I can only put so much weight on the new hip. Lots or restrictions of movement. So I move from sitting (as long as I can) to walking around the house to the guest/TV room bed to the chaise in the dining/family room then to my bed for sleep and naps. All well equipped with reachers, grabbers, pillows to prop me up and all the other stuff I need at hand. It will be like a home hospital until the first of the year. I have to say I was expecting only two weeks of this and then back to PT and my life, but we will do as the Dr. ordered and err on the side of caution so we can make this one work and last. I am asking everyone to visualize the bone growing and the hip back to life with full use. The other replaced and necrotic joints are picking up the slack and they are hurting too, so I am laying low. I am grateful that Douglas is home to care for me even though we could use the money if he was working on a project. He has to stay home with me. I need help with much for next two months and no driving for me.

All in all I have to remain positive and laugh at times. Many times.

Miss Jennifer out did herself again. She made stew for a gathering at her house and dropped off some for dinner Tuesday eve. It was "amazing". When I am better we are having a cooking club !!! Kitty and Steven thank you for the meatloaf and chicken drop off and your visiting Kitty !!! You always make me smile.

We will stay home for holidays, obviously. Very low key !!!!

One of my friends whose name I will not mention is in need of some good vibes. Send healing thoughts out to everyone in need and this will help her heal too.

Be well and enjoy the fall colors while they last.

Monday, October 26, 2009

Recipe from Capella Farm's Momma-Farmer-Cook

Jennifer is my friend-neighbor who is amazing and raises all kinds of animals, 3 very smart and sweet kids, gardens and she, along with her husband Dave, have a CSA farm to boot. They, like us, would like to be self sufficient and make money at farming. They are light years ahead of us so we share secrets and stories and I get to enjoy their fantastic eggs. She sent some pea soup over that was amazing. Here is her recipe she said I could share. In her words:

I cooked 3 - 4 cloves of whole garlic, 2 or 3 small onions, a bunch (maybe 6) carrot tops, fresh pork bone (the left over from a pork shoulder that I had cut the chops off of), 2 smoked shanks, and 2 bay leaves (fresh off the plant). I probably cooked this for 3 - 4 hours (in about 3 or 4 gallons of water?) after that, I strain all through colander, retain all the broth and bay leaves, and scavenge as much meat as possible. I eat the grizzle (maybe that's gross to some but I think it's good for the bones and cartilage), chop up the meat then add the peas (about 3 cups or so) and some thickly chopped carrots and cook for another couple of hours. Then I put it in the cold garage or fridge. The next day I heat it up again and eat it. It's better the second day.

My Dad makes a great pea soup vegetarian style and his is great but the pork in this melted in my mouth and I love big chunky soups. I gave her a kale pesto recipe a nurse shared with me while in hospital so will try that next. Just like regular pesto with no cheese. We have a ton of kale I thought was eaten by bugs or frost bitten, but it's growing strong again.

Douglas and I worked together a bit on The Freakin Universe. Not quite ready yet but we will send an invitation to the online venture he has been working on for over ten years. It is amazing how geeky he has become. I remember showing how to email back in 1997. Funny. Now he has all the gadgets and programs for his work. Funny guy.

A local store wants him to make some artwork for their store. Holidays are coming and leaves are falling. Lots of leaves !!!!! Such a feast for the eyes is fall. This year seems so much brighter than last.

My body is healing nicely. I finally got the long lasting pain med Saturday eve which has been a huge help. The shorter lasting really is just for breakthrough pain. I have many bruises popping up in strange places but I remember that from before. The swelling moves around too which is fun to watch. Like a roving goiter.
I taped up and took a shower with Doug's assistance. My hair was a little greasy but now I feel fresh and waiting for the nurse to call with her schedule. Would like to know sooner than later so we can plan around it. Urggggg. My friend Renee is bringing her massage table over and leaving it so I can get body work. We trade for food from garden. It has worked out nice for me and I feel she loved the fresh food.

Last night was a rough night. Doug has a sinus thingy again and his back has been acting up after three days in hospital chairs and sitting at computer. He was tossing, I was cramping in legs-feet, could not get comfy and had the strangest ongoing dreams.It really does make a huge difference to us as humans when we get a good nights sleep. If we can get our mind to shut down usually the body follows but these days it's hard to shut down. I keep a pad of paper and pen by bedside. When I wake up in am I decipher the notes written that night.Those who know my handwriting, well lets just say, my Dr. complained about it and my pharmacist said it is worse than a Dr.'s. I can use the excuse I have arthritis or a shoulder replacement. It's been bad my whole life.Oh well I have other talents and gifts.......

Let me know how you all are doing. I had three friends who had surgical procedures last week and everyone has something going on in their lives which is challenging or exciting. I am here if you want to chat or brag. If I do not answer I am napping, on the pot, with a nurse or a visitor. Leave a message with time of call and I will get back to you soon.

Love
A

Sunday, October 25, 2009

Short and sweet

I am sorry for the short blog reports last few days. Hard to sit and type for too long. Douglas is back at work on the computer and in office and lots to do around casa and taking care of me. I am low maintenance............right? Right!?

It is Sunday afternoon and yesterday was a little busy here.Great to see loved ones and an old nurse I have not seen in a while. I am so grateful for those who cooked for me last few days !!! OMG the food has been fabulous and nurturing and your efforts do not go unnoticed. I will be there for you when you need it in return. Douglas cranked out a gourmet brunch today; Salmon with eggs and potatoes with Zingerman's 8 grain bread and chopped liver. Have to get my iron back up there. So I ate way too much. The leaves continue to stun me and I feel entranced in the beauty.

I see the surgeon wed. I am hoping to be able to start PT away from home in a week !!! It might be too adventurous. I am OK with being indoors and lounging at this point. Pain is under control and lots to read and watch the food channel lessons and movies. I am reading a book called "The Brief Wondrous Life if Oscar Wao" Constance sent it to me. Very interesting novel about an American Dominican immigrant. Rough language and reality but an intriguing read with real history added in here and there. The author, Junot Diaz" won a Pulitzer Prize. I will have to finish Chesapeake later. I tend to fall asleep after a few pages.

For those of you who have been confused as to what they actually did in surgery I will attempt to go back in time and bring you up to snuff: Back in 1990 when I first learned the steroids had caused osteo necrosis, also known as avascular necrosis or AVN(death of bone),the surgeon in NC where I lived at the time decided to do a left femur core decompression which was a pencil size drill into the center-anterior femur about mid thigh. The idea is that bone would grow back due to blood flowing to that area. It was unsuccessful due to the amount of loss and blood vessels-arteries were clogged or too swollen from steroids to reach the femur(thigh bone) femoral head and acetabulum (ball and socket)of hip joint. The femur is the longest bone in the body and it takes strong-healthy femoral arty-vein to get blood to the tip of it. Any swelling or calcification will impede blood flow thus causing death(necrosis). That summer I came back to Ann Arbor and had the left hip totally replaced by a sports orthopedic surgeon.I was not impressed by his work(not at UM). I later returned to Asheville where six months later I had my right hip replaced by a fabulous surgeon who no longer practices. I had no insurance and he paid for it himself. I am forever in Dr. Smith's debt. This was a total success.I have since had the left one revised two more times. This last one was a right revision but only the plastic lining at socket needed to be replaced due to a large crack allowing synovial-joint fluid and debris to collect in the posterior region behind the metal ball and plastic sicket where bone should have been. No wonder they could not find synovial fluid when they did a biopsy a few months back. This is what we fixed with a filling compound made of two types of calcium to stimulate growth. It will take while to know if it is working and really we may never know. If it hurts down the road we will know it needs further repair-revision. I could keep it for life? So that is the scoop. It was my 6th joint replacement to date. There are necrotic areas in other parts of my body, knees being the worst. We will try the drilling in the right knee later next year. I have about one year of healing-rehab to get both hips up to snuff. For the next 8 weeks I wear a very uncomfortable brace. If you see me on a cane, walker or in a wheelchair just know I am taking care of myself. Lupus is doing great shhhhhh.................Hopeful !!!!I hope none of you Lupies ever have to experience this.

As many of you know I am writing a book of sorts and this blog is a journal from which I will extract much of the personal information. Sometimes I write exactly what I am feeling or doing. It is my way of sharing with my loved ones, and eventually the world, what it is like to thrive with lupus. If you know someone who has lupus I encourage you to get them a journal or blog and inspire them to write. It really is a great tool for many reasons.

Make it a great day for you and all around you !!! Love and blessings.......Angela

Saturday, October 24, 2009

Saturday October 24

Rainy fall day but so beautiful with all the colors of fall's glory. It will be a very busy day. We have Ling Ling, Nina's Shitzu, for the day and she loves to snuggle with me(I love to snuggle with her). She fits in my hand or pocket. The nurse will be here between 2-4 pm and Douglas will use that time to run errands. Then my neighbor friend Jennifer made soup and maybe kale and will enjoy that for dinner ! Douglas will be happy to have prepared food with out me trying to direct him. Mary Mandeville will come by too with soup so that is fabulous ! Thank you so much everyone !!!!

I am still slow and sore. My home PT Sally Richardson and I decided that with all my experience and restrictions I can do on my own and save time and money. Then next Wed. I see the surgeon and tell me when I can go to land PT, move about and maybe drive. I have to wear the brace for 8 weeks. Hard to move about with this on. I know I will have itchy feet to get out and about. Good thing I have an electric chair and dad bought me a ramp for the van and it works.

Tell me how you are doing. Love to everyone !!!!! Angela

Friday, October 23, 2009

Still in a Daze..............

Hi !
I am home and trying to catch up on sleep and rest.The leaves have started turning all spectrum of fall leafage color from vibrant green to yellow to orange to purple and then brown. It is lovely !

I will write more tomorrow. resting.........Love and Blessings to all. Angela

Thursday, October 22, 2009

Angela is hOMe from the hospital, All Is Good.
Getting settled for the next few days.
Will update tomorrow.
('sigh of relief' inserted here)

Wednesday, October 21, 2009

Partial moon rising

Oh boy.........trying to be fitted for a leg brace is quite interesting in a hospital gown with no panties. I was mooning everyone. Now that the catheter is out I actually can wear real people clothes !!!!! Whoo Whoo !! The brace has been fixed and fitted so I did PT a few times today walking about with the walker. It is the small steps that feel so good. I am feeling ready to go home. I get out of the brink tomorrow !!!! My bed is waiting.

Doogie is staying with me tonight in the room. A very sweet nurse assistant found a recliner for him. I have to have his assistance to get to the bathroom and other stuff. We are both looking forward to getting back home and yet feel blessed this stay has been really good and I had a private room with really good nurses and all is good except what they call food? Really?

Thank you for all the emails. Love to all. One of us will update tomorrow. Hugs !!!! Angela-Robo Babe.

Tuesday, October 20, 2009

care and feeding of me.....angela (under the influence-d)

hi! ya'll. thank you for the light, prayers, good vibes,calls,emails and cards sent our way. i am doing great and waiting for a brace to be made for me to wear 8 weeks while moving about and then tonight i can start mild pt. still have a "port of sorts for IV steroids and antibiotics until the blood culture comes back. i am still with pe-pe catheter but bathed, sheets cleaned and well fed and watered. doug slept at the med-inn here at the hospital which is convenient and one step up from motel 8 yet just down the hall so he attempts to sleep and geek.
all is good in the slammer.

my surgeon, dr. blaha, said the bone which died(disappeared) behind the prosthetic acetabulum was filled with calcium fluoride and calcium phosphate.better than the old cadaver bone they have used in past surgeries. he said the only way to know if it grows bone is in 6 months doing a CT scan but we both agreed not to do one due to too much radiation....the old glow in the dark trick. if it starts to loosen or hurt we will know it did not work, in which case they would redo the ball or i could keep the whole kit and kabuttle for years.

i asked if we could inject that into the knees, left shoulder and other necrotic areas where bone has died. he said there is one surgeon at St.Jude children hospital down south and they have only tried it in 100 people, two who he sent there from here. he said the results may not have been worth the cost and effort. he still wants to hold off until it hurts so much it is debilitating (some days they do) but we decided no more surgery until the hips have fully healed and then we would try a more conservative approach called drilling which can stimulate growth naturally by making holes in bone where osteometabolism would naturally do it's thing. i have one before but it was for the hip and i was too far gone. the knees still have a fighting chance (all good). the various spots on other bones do not seem to be of concern and i have actually started bone growth even "they" said it would not happen. these times they are a changing.

doogie will keep you posted as i go in and out of lala land and a knows at the door by some hospital staffers every fifteen minutes while beepers are going off. please do not call unitl i get home. crazy little room and doogie has computer-phone in some zones. plus it seems like the dr.'salways come in when the phone is ringing. this is the best from of comunication unless you want to visit then call ahead. my room number phone is 734-936-5409.

nina you said you wanted to bring food-juice? i do have some cravings......so you can call me. zingermans chopped liver-matza ball soup,co-op kale,salad,mashed sweet or regular potatoes, winter squash, plain baked tofu or savory with miso giner/garlic and roast chicken and anything home cooked from produce station is on radar for anytime. maybe when i get home..........or here too. carrot-ginger-green apple-lemon-beet juice always great ! i will remburse. but do call first as meals are strange here and never know when they come or what to expect. thank you for the book. i know i am a butt head.........but i am your butt head !Private joke.inspirational stories.

much love to everyone and know you are all in my prayers and heart.

love
angela ( aka robobabe ) i love my hubbies humor and is wonderful !

Monday, October 19, 2009

hubby report.2

Out of surgery - on way to recovery.

The liner to the hip socket was cracked and replaced.

Ball/fixture is anchored well into the femur with no loosening. No need to replace.

Cup in good shape, still anchored well into the 'perimeter' of the socket.

Significant bone loss 'behind' cup, loss of socket mass . The void was 'liquid filled' with debris which acted as an abrasive wearing down the interior space...pain factor.

Doc- "Data shows best to not remove and replace 'cup' so to not disturb that bone which is holding the existing cup in place". They drained the liquid and packed the void (through holes in the cup) with 'plaster' type bone growth material which stimulates bone growth exceptionally well in animals... 'humans, a significant increase, yet to be fully determined.

Her mobility will be just as good as before surgery with a decrease of pain.
If bone additive/growth stimulant does not 'take' her existing socket/ball attachment will stay in place for as long as it does.... various complications from there on.

He's siding with the data showing positive bone growth, the strength of the existing bone supporting the prosthesis's, Angela's age and "outlook". Diet, exercise and one heck of a positive attitude.

I side with the Doc.

We are so lucky......

hubby reporting:

Angela went in at 3:30 pm. Looks like she may be getting a revision, not a full replacement... great news! Glad they have spare parts for 20 yr old equipment. I was concerned I'd have to weld something together from my studio... 2+hours to go....

Tuesday, October 6, 2009

The summer that never happened..............harvest time

Wow it is cold and we are running the hot pad on our bed at night. Even had a fire in the fireplace Saturday. I am bundled up like a Christmas package sent by fed Ex, all layered up in scarves, pulse warmers, leg warmers and whatever I can find to keep my extremities warm. Lupus does that. The circulation down to the lower legs and arms plus head leaves a lot to be desired.

Two weeks from surgery. I am counting the days. Feel good about it though. Especially after a grueling weak of PT doing deep tissue work and realizing that until I get this operation my sacrum and pelvis continue to go out. This causes all kinds of issues. Hard to do a whole lot without throwing it out of alignment.

The Lupus Education program is going well. I am happy to see the same faces return and concerned about the faces who don't. We are all fighting colds and getting over allergies. Now the flu has all in a tizzy. I am not a vaccination kind of gal. The last one I got was for pneumonia and not a live virus. Benign yet i cringed to get it. I have never had a flu vaccination. Never will either. I see people get sicker from that than the flu. To each her own. I take all precautions, use sanitizer like crazy, do not touch or get near sick people, wear a mask if I feel vulnerable, wash my hands often and long and keep tissue with me at all times. If you do get the vaccination make sure you are getting the one which is dead and not live. Oregano oil is also an agent which can help you recover from HINI. The regular American flu is best treated with fresh ginger tea, chicken or Matzo Ball Soup, warmth, rest, lots of fluids(water), some sort of inhaling essential oils like eucalyptus, camphor or peppermint, vit. C, Zinc and if you do not have an auto-immune disorder you can take lots of echinacea tincture. Tylenol cold or some pain relive does not hurt. But time is what is needed so buckle up and enjoy the rest. If your fever gets above 102 go to the emergency room after you have tried ice baths and lots of cooling fluids.
Remember though to wear a mask so you do not get others sick.

Douglas and I went out to a local diner for breakfast. 3.99 plus coffee and juice. It is amazing how many people are still eating out but ordering the least expensive item on the menu. I bet the dollar menu at McDonalds is on over load. Would be interesting to do a poll on this. I put a lot of thought into food. I feel such a pull to continue my commitment to support local farmers, growers, food purveyors, neighbors with mom and pop operations etc. My neighbor and I spoke of this yesterday while she was making a time consuming chutney. I tasted the Ketchup she made which was fabulous and a quickie recipe from her grandma which I will attempt to make this weekend. I am making the chutney tonight with green tomatoes from our garden. Tomato season for us is over but farmers who have green houses still selling at the market tomorrow and Saturday. I am also going to attempt mustard green-cabbage kraut. I made a cabbage-tomato chow chow this weekend which was fabulous. But my friend and i agree,Jennifer the neighbor who has a CSA and eggs, decided it takes a tremendous amount of work and is very much a commitment to not just growing and preserving your food but buying local and from farmers directly. It costs more in the short term but in the long run it is much less than you expect. Take peppers for instance. In the winter you pay 4.99 lb for a red pepper(un-organic from Mexico. If you buy a bushel of peppers from a local farmer and freeze them or you grow your own and preserve somehow you save money because in peak season your paying a quarter of the price. Same with apples, tomatoes etc. But who has the time? Plenty of people take the time or they pay someone to do it if they can afford it. Once you make the commitment it all falls into place in about 3-4 years. You realize you have a network of growers, farmers and others who are into trading and sharing, they might buy something you grow or make, your community is thriving because you are keeping your money local and small businesses can survive with little shipping costs. It all makes sense. I call it bio dynamic living some call it permaculture or sustainable farming. Even in Detroit groups and urban gardens are growing raised beds on toxic land while cleaning the land for larger plots down the road. people are making food form these gardens for the poor, sick and elderly while teaching urban kids all about food. They learn a trade too. How cool is that? I realize it is not feasible for most families yet every bit helps. Take a drive in the country near your home and stop at a couple produce stands or farms. Pick apples with your kids them make applesauce. In this way the kids have a fun day in the country, learn about where their food comes from, supports local economy, they learn how hard it is to make real applesauce and how very good it is and have fun. My sister does this with her girls and they understand. Maybe instead of a lemon-aide stand next summer you have a produce stand?

Happy harvest