Saw the eye specialist today....

Another trip to the eye specialist. 3 weeks of steroids so far and 3 more to go tapering down to finally 5 mg. She wants me to look over a couple of drugs, cellcept and cyclosporine. My immune system is weakened now, and these drugs will take it down completely. We discussed them some today and will do more on my next visit. 

Darling Husband asked her about what kind of time I will still have to see, but there just aren't any answers. Doctor Larsen hopes I'll be able to keep some sight, but told us that treatment won't let me regain sight. Disappointing, but I already knew that from researching autoimmune retinopathy, so hearing it wasn't a crushing blow. I know it hurt DH to hear it, not just from me, but from a doctor who has seen other cases of it.

So, that's how the weekend begins. I'm ready to spend some more time researching those drugs, not today or tomorrow, sometime in the next couple of weeks will be soon enough. Since I have three weeks before the specialist and I meet again I will have other things to occupy my mind and body.

Tomorrow the temps will be in the 70's so I will get out and ride the new electric trike. I'm so looking forward to it, nice weather and sunshine. It's been awhile since I've been out, and a few weeks since I got to try out the trike. Today we're putting reflectors on it and switching baskets from the other trike. Gotta have more room to haul purchases, and the rear basket we just installed is more than twice the size of the one which came with it.

This weekend I'll finish stripping out our closet and begin painting on Monday. Some wallpaper in selective spots and custom rods will take another day or so. By Wednesday it should be finished and back in order. One closet down, and three more to go. Not bad. Progress is always great. Steroids giving me oodles of energy mean I'm not sleeping and spring housecleaning is almost done.

Other than riding this weekend I don't know what we'll do. With Sunday being weathercrappy, (yes, I made up that word and I like it and it's staying) any outdoor fun will be a Saturday thing. I am feeling cooped up again, winter and bright sunlight conspire to keep me indoors. 

I ran across a photo of my no longer mine beloved Subaru. How I miss driving, getting behind the wheel, elbowing the dog away from the gear stick and just going. I got my driver's license on my 16th birthday, and drove ever since. Took for granted being able to drive. With a shattered right leg and broken left wrist, in 2001, I'd crawl in from the passenger side, hip to ankle cast across the center console, driving with my left foot. Walker tugged into the car behind me, I still went anywhere I wanted to. Now, there's no more driving at all, a trike is as close as I'll get to that freedom. Loss of freedom is never easy, and I keep looking for positives with this one. No insurance to go up, no tickets, no car payments, no maintenance, no worry about gas prices. Still, I'd rather drive.

Enough for now, steroids are making me get up and clean something.....

Accomplishing things

Back to the eye specialist tomorrow. I wonder if the medication will show any slowing of the disease at the three week mark. I need for it to work, it's my only chance to retain some sight awhile longer. Other options are too risky. No established treatment and no cure are terms I'm thoroughly sick of hearing and reading.

Company will come next week instead of this one. Gives me more time to get the closet done and the house back in order.

 One thing on my shopping list is a lovely carpet for the closet floor. Although small, I want it to be a real jewel of a room, pure pleasure to open the doors to every time. 2x8 will take care of it. Small runners are pretty inexpensive and will be an easy solution.

Pouring rain today, something we really need here in Oklahoma. The dog and cat came through the pet door thoroughly soaked. Of course Demeter immediately jumped on our bed, and Layla jumped in the planter full of begonias. Guess that explains the flattened flowers that had me puzzled. So, I need to repot a flower and change the sheets......

There was a home improvement show on earlier that I cringed through. The husband had to fight and battle with his wife in order to have a chair of his own. A chair, one place just for himself to sit and relax, one thing of his own that is what he wants to use after a hard day's work. Also, he was working hard on the remodel along with the show's hosts to save his family money. The wife would rage at him when she disliked something, at one point asking if he was drunk or dumb. If she was that nasty on camera you have to wonder what she is like when the film crew isn't around. I was mortified watching that kind of behavior.

I'm anxious for the hyacinths to come up and bloom. There are 6 blue (purple?) planted and there is blue aquarium gravel on the top of the pot to keep the cat out. They should smell great. There is a bag of the bulbs under the sink and I'll stagger planting them every couple of weeks. I think it will be a fun addition to our home.

Most of the clothing is on hangers in the hobby room. Now to photograph every piece along with accessories and shoes so outfits can be put together on the computer, printed and all in a binder. I figured out a system to identify each piece. Now to figure out how to label it all. It will be a relief to have a way to dress the way I want to without seeing the clothing. Doing the bedroom closet and the wardrobe at the same time will work out perfectly.

Darling Husband came home and within a matter of minutes got called back in. He works so hard to provide a wonderful life for us, not just at his job, but also here around the house. There is always something that he's fixing or improving to make our life better. I love that he enjoys doing things here at home, especially in the gardens. Between us the place looks spectacular. Every year it gets better as we think of things that we'd like to do or have to have the environment that we want around us. He is special and makes my life a magical place, one I want enjoy for the next thousand years or so.

Well I napped for about an hour last night and have been up since. Wide awake and have been busy. Screwy doggoned sleep cycles......

Today I realize that feeling good is especially nice. The house is clean, laundry done, garage in good working order except for the workspace corner, saw a doctor, cleaned a portion of a closet, made an incredibly huge dent in the chaos which is my hobby room, watered plants, changed the sheets, cleaned the kitchen, played with and fed pets, etc. and I still feel good. 

Listened to a show about old cars tonight. The people on the show restore them. There were 70 chargers, 70 challengers, and a 71 super bee. My very first car was a 1971 dodge challenger convertible, orange, white leather interior. When I was a teen I worked as a lifeguard. While I was working there would be a crowd of males drooling on the engine in the parking lot the whole time. they'd pull the hood pins, raise the hood and just talk cars. Listening to a bunch of guys who love those old cars and know their stuff was amazing. I heard information about the cars that I had not heard in decades.

Mom's newest box is mostly packed. A couple of wigs and a wig head, more clothing and scarves, some catalogs. If I send anything else I'll need to pack a second box.

Monday updates

Once again I explore and consult the web as I finalize plans for our bedroom closet. Wandering amongst the beauty and unique solutions offered by Pinterest, etsy and google, I am still doing the final tweaking of closet setups. Would love to blow out the wall between our closet and the office one which backs onto it. That project is beyond my capabilities at this time. 

The garage is much neater, just needs some light rearranging to increase function. In my mind I know where I want everything, and already have sliders under the heavy items.  Having a carpeted garage is really nice, easy on the feet and legs, and warmer than bare cement.

Doctors visits each of the next three days. Hopefully that will be all for while. While I love to get out and go places, doctors offices do not count. Today we did go to the pharmacy. Darling Husband stood in the RX line for more than 20 minutes while I wandered with a shopping cart. Found taper candles on clearance for a quarter each and stocked up on pepto bismal and band aids.

My youngest, Arthur, came over for a few hours to visit. He had just left a job interview and I have my fingers crossed for him. It's not easy for returning veterans, and his coming back to Oklahoma from Afghanistan has been rough. I had sold our home while he was gone and now live in the city. He was pretty much raised a country boy. There are adjustments for him.

Darling Husband's ex wife and granddaughter came over too. We all sat around eating pizza and breadsticks. His ex is also my hairdresser and she takes care of not just my hair but also is my go to person for makeup and styling tips. Special lady, I just love her. Little Leighton is growing rapidly, 17 months old, with the most lovely smile I've seen in a baby. She was fascinated by Demeter and watched her during most of their visit.

Later this week one of my closest friends will be here for a couple of days. I'll get the guest apartment in order, and goodies stocked in the fridge. I'm looking forward to seeing her, we always have such an amazing time together.

I talked to Mom over the weekend and let her know that I would be sending her some wigs this week. I have already sent her hats and scarves and a book on wearing and tying hijabs, the lovely muslim headscarves. Losing her hair due to chemo has been hard on her, and she is really enjoying having ways to wear headscarves that are beautiful. It makes me happy to send her things, especially things that add beauty to her life and make her feel pretty. Going through chemo is hard on a women's self esteem, it makes changes to her that are beyond her control. Her body and her appearance are different. Feeling good doesn't just happen. New clothes and accessories will not cure her, but it will hopefully make her feel lovely, and that can help. Mom has beautiful brown eyes that the scarves will bring out, and I'd love to go see her in them.

Tired and wrapping it up for the night.

Sunday Sorting

There are many things going on that I am in the process of accomplishing. There are even more on the back burner, waiting for time. Of course, I'm in a hurry to get it all done. There are hobbies to indulge in, books on tape to listen to, gardening to make me happy, skills to practice, etc.

I love the fact that our home is beautiful. Decorated in a relaxed, traditional style, it is always warm and welcoming. From the front enclosed patio overflowing with flowers most of the year to the peach tree in the back full of birds at the feeder and a tiny cat hiding nearby hoping for a feathered treat, I truly enjoy living here. It is my haven and my sanctuary, someplace where I can just be me.

Being at home is a privilege that I enjoy, especially now that I no longer have children living at home. There is no particular schedule I must keep, no more PTA or committees, no fund raisers to be involved with. Life is now about spending time with Darling Husband and doing the things that I like to do. The hobby room has many things for me to play with. The computer will read to me. The dog and cat make for good company. I will get to where I can cook easily again, it's just taking time...

I like my own company, although I really do need to get out and make more friends. Being alone is different from being lonely, and I don't mind being alone most of the time. Sometimes I do get lonely. Working with the public for many years and having to stop due to illness has been tough. I like people, a lot. Being friendly and outgoing was natural to me for so long. Now, I seem to be becoming shy. Not hiding kind of shy, just not as easy and relaxed around people. Some of it is that I cannot see to read expressions well anymore. People have to be up close for me to see them, and it's a lot closer than most folks like. Remember "Dirty Dancing"? "This is my dance space. That is your dance space". It's just not comfortable to be that close physically to anyone unless you have an extremely close relationship.

This is another night where I'm not sleeping. I went to bed and stared at the dark for awhile and finally got up. Last night I slept 12 hours, most others I sleep from 3 to 6 hours. Not complaining, I get a lot done when sleep evades me. Chores, projects, thinking, whatever else there is. So, I'm curled up on the sofa, iPad in lap and magnifying glass in hand. Wish I had Siri to dictate this to.....

I taught the dog and cat the term "girl time". Whenever I say it the two of them, both females, go to the bathroom with me. Then they get petted and told what good girls they are. Okay, so I'm easily amused. Anyone else taught their pets that one? They are a pair of smart girls, and loads of fun.

Weeding out the kitchen cabinets again today. The kitchen table is piled high with things I no longer want or need. So many things I tend to think that I'll use and then don't, it makes no sense to keep it all. 

A simpler life is happening day by day. Fewer things to keep track of, less to clean and take care of. The things here that I use do make my life pleasant. I replaced my almost empty homemade spearmint hand soap at the kitchen sink with pomegranate scented this afternoon. There is a pan on the stove covered with roses that remains on low heat filled with Gain fabric softener which gently scents the house and adds moisture to the air. A purple orchid next to the sink makes me smile. A Mickey and Minnie cookie jar hold hard candies on the buffet and add a touch of whimsy to an otherwise dignified decor. Special touches that remind me that I used to see to shop for fun things to make my home unique and to enjoy looking at as I cooked and cleaned.

Tonight I'll tackle the hobby room and try to get things in order. The hobby room closet will hold out of season clothing and formal wear as well as the antique linens. A huge Godiva bag holds dozens of scarves which need to be ironed and hung up. I have half a dozen hangers filled with scarves and need a better way to sort and store them. Right now the system consists of reds, whites, weirds, ones from Afghanistan, ones from India, Grandma types, party and formal, etc. I definitely need a better system.

The bathroom is sorted out as well, everything organized and unused items pitched. There is only one cleaning product in there now, comet. Glass cleaner stays in the kitchen cabinet and gets carried around. One kind of bar soap, Ivory. Manicure things have a pretty container to live in, as do extra hair care items. The towels are in good shape, and washcloths and hand towels are neatly folded in a basket in the bathroom cupboard.

Listening to a show about nuts, the tree kind. I liked the part about bees pollinating the almond trees. Interesting to know that honey made by bees from almond blossoms is inedible. Heck, it sounds like it ought to taste good.

Enough for tonight. I have plenty to do this evening that won't get done if I keep typing on the iPad...........

Plenty to do

The Christmas tree and decorations have been packed away for another 11 months. In taking everything down I sorted through the ornaments one more time, discarding another third of them. Next year I'll purchase a pre-lit tree, it's too difficult to spend one entire day just lighting the tree. I found myself crying, wondering if I'll ever be able to see another tree. This year it was a dark blob with huge balls of bright light. Once I was within a couple of feet I could make out some of the ornaments. I spent a lot of time this year just memorizing the way it looked.

Returning to the eye specialist later this week. I'm tired of doctors and medicines altogether. Too many pills, shots, tests, waiting rooms. Before getting ill I was strictly an aspirin and vitamin person, that was it and to me, more than enough. Maybe I will get some good news, like the steroids are slowing the progress of my disease as they take down my immune system. I need good news. The other medications being tried for AutoImmune Retinopathy are too dangerous. I won't risk trying them and ending up with side effects that will make me a total invalid or possibly be fatal. Steroids are my one chance at seeing awhile longer, they have to work so I can maybe have a little more time.

The house is mostly clean. There is one more load of laundry to wash, the hobby room is a huge mess, piled everywhere with clothing.

 Our bedroom closet is next week's project. I have the paint, wallpaper and custom shelving ready to install. Once that is done every article of clothing and all of the accessories will be photographed and a lookbook of outfits will be assembled. 

Still figuring out a system to find everything when I can no longer see it. Frustrating, I'm still puzzled as to just how to go about it. Labels of some sort, putting buttons or pins perhaps on labels, but then how to mark things like shoes or socks...

Marking appliances and canisters with raised bumps was easy. I can use most things in the kitchen. Cutting things is really hard, I'm scared that I will slice myself up. Reaching across hot burners to get to the controls on the stove is difficult. I pretty much quit using the stove for cooking, and am using crockpots and electric skillets. Not easy, but it helps.

Going through the kitchen and hobby room again, weeding out more items and simplifying my life. Knowing that things I thought that I'd need over the holiday season were not used means I can pass them on without guilt.

Tried to read part of a novel the other night. Just could not get into it. Lately all I can handle is non-fiction, things mainly to help me adapt and adjust to blindness which gets steadily worse.

 I feel a time crunch where sight is concerned, almost a panic mode to try and get everything done as quickly as possible while I can see enough to do them.  I worry about being in total darkness and attempting to live normally. One of my doctors suggested I get a housekeeper to help out. Good idea, but I'm not ready for that step at this time. Perhaps with spring and fall housecleaning and then see how it goes. I really do have to give kudos to a doctor who has great ideas instead of pills, that is the kind of thing that does help me. Too bad books that are written to help people adapt to low vision and blindness do not include things like that. The books I've read say "get closer" and "use a magnifying glass". Those are great ideas as long as doing those things still help. When the vision is gone no magnifying glass will do a thing.

Thought about starting an aquarium and then decided it might not be the best idea. The dog and cat can tell me when they are hungry. Fish are too doggoned quiet, they'd starve if I forgot or got busy. Same for aquatic plants, I'd end up with an aquarium full of dead plants, pretty sad.....

Tomorrow I hope to get the garage in order. My treadmill is in there along with an antique stove, bookcases full of gardening supplies, a folding area for the laundry, golf equipment, a tool box and a work table and shelves to store the power tools. Also, 2 trikes and Darling Husband's vehicle, a huge Expedition. Hard to believe my Subaru used to fit in there also.

Now that the holidays are over I have plenty of projects to keep me busy. At some point I have to make a grocery list and get to the store. The freezer is packed full at this time as well as most of the cupboards. I know I need a new soup ladle, I somehow melted the one I have. There are photo frames to purchase, and the sunlight has caused some lace curtains (at least 10 years old) to shatter. I want brightly colored cutting boards and utensils so I can see to work in the kitchen. I also need lighting under the kitchen shelves so I can see the counters easier. I just really need things that can let me stay independent awhile longer.

Lots of thinking tonight about the things to do in the next few weeks. It seems as though there is so much on my list and yet pacing myself and doing just one thing at a time will let it all get done. I am impatient, wanting everything done now. 

When the to-dos are done it will be time to start the flowers indoors for our gardens. There are packets and bags of flower seeds, mostly annuals. The packets of Birds Of Paradise seeds which arrived around Thanksgiving need to be planted. That will be something to really look forward to. 

Add Elephant Ear bulbs to the shopping list. Go ahead and plant Hyacinth bulbs tonight or tomorrow indoors just for fun.

I do love growing plants, indoors and outside. It relaxes me in many ways. Having my hands in the dirt and seeing results of digging makes me happy. Making things grow and bloom feels good to my soul, I feel a type of peace that few other things give me. Accomplishing and being rewarded for hard work and effort by wonderful sights and delightful smells is so special. I spend a lot of time in the warm weather out in the gardens. The gardens look better each year, we keep adding things. For my 50th birthday, Darling Husband got me a Weeping Willow, something I had always wanted.

Enough for tonight.

Lately I've been on a real tear about clothing, style, wardrobe and beauty. I've been trying to figure out why it has become such a huge thing to me, and becomes more so by the day.

A big part is that I'm seeing less and less. What is visible is a blur, doubled in each eye, seen as through a tunnel. In low light everything is total darkness. In bright light everything is whited out. Color contrast is disappearing. What is left of the world that I see is heavily airbrushed. I do not see dirt or trash. My world is a lovely place that my memory uses to fill in the blanks for the things that I cannot see. 

I refuse to watch or look at the bad, the ugly and the horrors of this world. I want to see only beauty and loveliness while I can. That is what I need to have fixed inside me as protection should my vision loss lead to total darkness.

Knowing that every part of my world is filled with beauty is the way my life must be. To have things that I know every detail of are comforting to me. Looking the way I think I should look will keep me confident.

It's a way to help handle not seeing. A coping skill of sorts, one that brings me peace. To be able to imagine my world in the way I would want it to be if I could see will make it easier to adapt to blindness.

So, along with taking down the holiday decorations this week, I will work on my wardrobe. There will be a system that works for me to organize clothing and coordinate outfits without being able to see it. Another thing to do is to go through my makeup and discard everything that is unnecessary or not used. 

Hopefully, this will let me quit fussing so much. I have better things to worry about. Knowing that my life is where my mind and heart want and need it to be is promising. One less thing to deal with in the whole process of going blind. 

Enough for now.