The weekend beginnings

Memorial Day Weekend..... It has begun with relaxation, sleeping in, setting steaks out to thaw. The house is clean, laundry caught up, flowers planted and a list made of more plants to purchase. I need a trip to the grocery store desperately, we're out of many basics.

A week and a half ago my doctors made 3 major medicine changes. This week, I was coming out of my skin, crying, shaking, not sleeping, in more pain than I'd had in quite some time. So, more medication changes were made, and I hurt much less, and my body is rapidly settling down.

Thank goodness for great doctors. I know that they are learning more about rare diseases than they ever thought that they would. They didn't give up when it took over 2 years to get a diagnosis. One of my specialists, however, is eating humble pie after informing me that it was all in my head. I knew better, and so did the other specialists who kept pushing and ruling out disease after disease until the right tests were performed, and they figured out what was happening. 

 It's not easy having me for a patient. At this time, they don't have a cure, treatments are being experimented with. Along with the AutoImmune  Retinopathy, toss in Cataracts and Arthritis, add some depression from dealing with it, and it tends to make me a pain to treat. Mainly one of the big problems is side effects from the drugs used to treat me. The side effects keep me from functioning well, and sometimes from functioning at all.

At times, I don't feel like a person. I'm a patient, a chart. 

We probably won't see my youngest this weekend. He's been in Moore, Oklahoma since the tornado on Monday. Being a member of the National Guard, he left work, got to sleep for a couple of hours and then they called him out. He's had a break, went to sleep, worked a shift at his regular job, and then reported back to duty. He lost his car keys, and his car has been parked at the National Guard Armory in Norman all week. Try to find car keys in a path of damage a mile and a half wide and 17 miles long. Luckily, his roommate is also serving and can take him back and forth.

The tornados have been a nightmare. We live about 10 miles away from the path of the Moore tornado, and about 7 miles from the path of the tornado that came through on Sunday. Being blind, I'd be in the way, so I've stayed home. Not knowing what else to do, I went online to the Red Cross and donated money. Then, I paid my son's phone bill to give him one less thing to deal with while he's on duty.

It's so wonderful to see the way that Oklahoma comes together in the face of disasters. Help comes within minutes, and everyone gets helped. There are very few homeless here, even with thousands of homes destroyed. That's due to family, neighbors and even total strangers opening their homes to those in need. We take care of our own here.

One of my sister-in-laws is an RN in east Tulsa, but in her off time she's been in Carney, one of the towns hard hit in Sunday's tornado. 

Enough for now

More.

I made it through Mother's Day. Had a few meltdowns, some major, some minor. Slept, cried, ate orange sherbet, cried and slept more. The only highlight of the day was the Survivor Finale, and then slept again as soon as the winner was announced.

I had yesterday booked solid. Eye tests and another appointment with Dr. Larsen in the morning. The afternoon held appointments with my Shrink(s) and with my GP. More blood work. The ear infection is back, and worse, so I'm on the third round of antibiotics and will see my Otologist if its not better by Monday.

More colors fading and the left eye is down to shapes, some colors, light and dark. It shimmers more than usual this evening. Annoying. There is a huge bruise almost a foot long on my left thigh from running into furniture the other day. A large bruise on my right arm is nearly gone after a few weeks.

So, after a lot of arguments and fighting, I've made a decision. I'm gonna Take the steroid sparing drugs. The thought of the risks associated with methotrexate scare the crap out of me. I spoke with my GP and eye specialist yesterday and am not convinced that the drug is as safe as they think It is. I'm more than willing to try new technology, there are new things being learned and discovered each and every day. This one is one that I don't feel good about taking. I feel that I'm being pushed into taking it. Lowering my immune system more than the steroids already have will make me give up so much. For what? That's what I'm asking. To see for a few more months? Maybe a year or two? Is it worth it?

Half a dozen hats are on the kitchen table waiting for new bands and decoration. If I've got to wear them, they might as well look great. My hobby cupboard has several dozen rolls of ribbon, all colors, widths and materials.

Baskets hold silk flowers, peacock feathers and other trims. When it rains later this week, I'll spend a few enjoyable hours working on them.

Enough, I'm worn out.

Passing

Sunday evening, just had a (another) nap. Fussing with the Windows 8 on my new laptop and finally downloaded kindle for PC since the kindle app that came with it had me gritting my teeth. Why should you have to redownload a book because you sign out of the app? Anyway, got the program installed and 348 books downloaded from the cloud, so now I can enjoy it.

My purple irises are blooming. Two years ago they didn't bloom, so I dug them all up and divided them, moving them to another part of the garden. The clematis vine is also blooming. The peonies are up, as well as the stargazer lillies that I planted last year. I'm ready to plant more flowers ASAP.

Dad passed away Friday afternoon. I was at the grocery store and received a text expressing sympathy on his passing. That is not the way to find out that your parent has died. I had been shopping for over four hours, and was in the checkout line, tears running down my face, and still had to wait for Darling Husband to come pick me up. Rough day, really truly rough.

I've spent the weekend talking with my sisters, getting things done, and thinking a lot. I won't travel to Indiana for the funeral, it's more than I'm capable of at this time. Having even less vision than I had when mom died three months ago, made my decision.

Dad gave me up for adoption 50 years ago, and two of my sisters 45 years ago. He kept the youngest two, and they were with him at the end, along with my stepmom. I wonder if he ever regretted it. And I wonder what life would have been like if I had grown up with him.

I had always been part of his life, mine was an open adoption, unheard of back in the sixties. My stepmom and adopted dad were engaged to each other back in the early fifties. I grew up with all of the families around me. Both dads at my wedding and graduation.

When my daughter was born both dads came to see me. They had grown beards and didn't recognize each other. One walked up and held out his hand, saying, "hi, I'm Suzy's dad". The other put out his hand and said "so am I". I nearly wet my pants laughing.

I spent time with my birth family, a lot of time. Phone calls, visits, cards, holidays, just like a normal family. My two sisters who were given up never have. They had no relationship with him, never met the two youngest sisters, even though they grew up about fifteen miles away. It was a different dynamic with their family. I met the girls who were given up when I was a young adult, and have good relationships with them.

I feel that dad really missed out. Five beautiful, amazing women, each one accomplished, loving, intelligent. Four of us have married, have children, and wonderful lives. We're successful women, well educated, each in different ways. In many ways we are similar, but there is no confusing any of us with the others. Two are grandmothers.

 Five grandchildren live within twenty miles of dad, and he chose to not have anything to do with them. What pain his actions have caused others. I'm fine, but I hurt for my sisters and stepmom. 

Consequences are painful, not necessarily for the one who acted, but for other people who are part of their lives. Dad really missed out on life. What he had was good, but could have been so much better.

Enough for tonight

Good and bad

Today was my first Orientation and Mobility (white cane training) visit. The gentleman who will show me the ropes was very kind and easy to talk to. I'm really looking forward to the lessons. They will rock my world, just by virtue of the degrees of confidence and independence that they will give me.

Got a message earlier that my Dad passed away today

Loveliness

What a lovely birthday! It began with kisses, a card and flowers, roses and stargazer lillies. Many calls came from loved ones along with dozens of messages and posts on FaceBook. Lunch from Del Rancho was a BLT. A trip to The Festival Of The Arts, where I found a lovely wooden serving tray inlaid with stones, made a perfect birthday gift. From there a couple of happy hours spent wandering through Myriad Gardens, admiring the beautiful plants and waterfalls. Home, dinner from Paseo Grille, delivered by 858-ToGo. Carrot cake with cream cheese frosting finished the day. A perfect birthday, all in all, one I couldn't think of another way to improve.

Attending the Festival Of The Arts is an annual tradition. Darling Husband first took me there on my birthday when we were dating. We've gone each year since then. It's special, and a treat that makes me smile when I think of it. 

This year I wasn't looking at paintings or photos. I wanted to "see" things I could touch. I'm done purchasing artwork for the walls of our home. Now, it's textures, items with unusual feels to them. Seeing art just doesn't work for me anymore, it's pretty much a closed chapter. Wood, glass, metals and stone now appeal to me, as do textiles. Missing sight bugged me a lot at the festival. Touching things, listening to the many performers, being in the warm greenhouse with the incredible plants, sipping an icy cold soda are helping me to adjust to seeing less and less as the days pass. My other senses are compensating somewhat for the lack of vision.

This morning I'm watching Ferris Bueller, and laughing, truly enjoying myself. That movie shows how to really enjoy opportunities like an unexpected gift of time. The dog and cat are curled up on the sofa with me. How they can sleep is just beyond me, they take napping to a fine art. Each one stretched full length, feet twitching with dreams of adventures and soft woofs and purrs. They are each one the picture of contentment.

Today promises to be delightful. A lovely, warm and sunny day. The house is clean, laundry done, meals prepared needing only nuking to serve. A day made for enjoyment. Perhaps, I'll have the computer read to me for awhile, plant some elephant ears and caladiums. Maybe go for a ride, blast some tunes and straighten the garage, sorting more items for my youngest child's new apartment. Cleaning up the patio, planting vines in the huge pots and changing out the pillows on the patio furniture. Actually, I could do all of it. Who knows?

Two old friends from different parts and eras life contacted me over the past 24 hours. My heart is filled, happy and joyful. It's amazing, the way that lives and souls connect and meet and touch each other over a lifetime. Some things, a word spoken at the right time, a hug, a favor given without thought of payback, even a smile at a stranger make a universe change for people. You never can miss by being kind.

Enough for now.

Good Week So Far

Another busy week, and it's only Monday evening. The house is clean, laundry done. Darling Husband's Ex moved into our guest apartment over the past couple of days. Most of the items from the apartment are stacked in the garage and will go into storage for the time being.

Watching Ally McBeal again tonight while thunder rumbles outdoors. Still on season one, rationing it out a couple of episodes at a time. How I miss great TV shows like this, they are few and far between. I'm glad I had great vision when it was on originally, there's so much visual humor.

My Dad is in the hospital, going home Wednesday to have hospice care. Once again, I'm losing another parent. In some ways my heart is breaking again, others have me feeling almost numb. So much loss in the past year and a half, the deaths of immediate family members, the rapid loss of my sight, the loss of a close friend of 50 years. Part of life, I know, but enough is enough!

Tuesday.....

Today is raining so I'll devote the rest of the day to organizing the items going to storage. Some, I will probably pass on to my youngest who just got a new apartment a couple of weeks ago.

The weather is too cold and wet to do any yard work. This is the latest that I can remember getting my gardens planted since moving to Oklahoma. It gives me the opportunity to make more decisions about what to plant and where, as opposed to going to the plant section of the store and grabbing flats based on what is just pretty.

The weather has me napping frequently. I am sleeping well, the latest medicine dosage tweak has made a universe of difference. Just being able to sleep and awaken feeling refreshed is pure heaven. It changes my attitude about life and myself. 

Speaking of sleep, my pillow is calling.......

Stormy Night

Tonight I'm watching Ally McBeal, the first season. It was (and still is) my very favorite show. Losing more sight and adoring a show that is heavily visually oriented will more than annoy me over the coming decades. I'm trying to commit the show to memory. A couple of episodes at a time is making me extremely happy.

We have had some monster storms here in Oklahoma for the past several hours. Several tornados and large hail. Our power went out twice and the cable is still out. Other than that we stayed safe and dry.

I keep telling myself that gardening needs to be done. Last week was an ice storm, tonight will be down to freezing. Patience will pay off in a big way, but sometimes it's really hard.

In just over a week I'll be turning 52. I sure don't feel that old. Most of the time I still feel like I'm in my teens. Age is attitude, having some great genes doesn't hurt.

Enough for tonight, my eyes are hurting from trying to focus.